22 February, 2016

Overview of old forum posts from me from over the decade, 2003 - 2006. My personal rosacea struggles plus general rosacea information


Over the past 12 years I have asked for a lot of advice on rosacea forums, or tried to advice others. I accidentally stumbled on a series of old posts I made from 2003 til 2006 on a yahoo page and it was a trip down memory lane to read my old messages back. Not always a pleasant trip though. I'll make a selection of them below. Most detail my struggles with facial flushing and burning in the days before my IPL treatment, which worsened by symptoms quite a bit, and there are also a lot of posts I made during 2005, when I struggled particularly with what had happened during that IPL treatment. Sometimes I received very helpful and kind replies, other times people must have been at a loss themselves what to say or advice me. Or just plain bored with my on (and on, and on..) going stream of questions :) 

I didn't add all the comments and replies, as it's already long enough as it is now, this is just an impression of it all. I guess these posts showcase the despair I felt when the flushing started and got worse with time. In the medication post I made some time ago, I detail which medication eventually helped me get some control back (clonidine, praopranolol, mirtazapine and Xyzal) and some relief and I added background information and patient reviews on them. Also keep in mind that many of the conversations below are a bit dated by now, being at least ten years old. Not that all that very much has changed in the medical world since, however!! But at the time there was debate about how often in a month, week even one should perform IPL on rosacea skin. In hindsight, I think that whole concept has proven itself to be a wrong one. IPL shouldn't be done weekly, as this creates not enough downtime for the body to absorb zapped and destroyed blood vessels, and also won't allow the epidermis enough time to recover. But at the time, it was a 'hot' topic. 

At the bottom of this post I added pictures of my skin over those years and after starting with anti-flushing medication. Scroll down for them.




Oct 28, 2003

Hello to you all,

I've been reading all the messages on this site for a few weeks now, after being diagnosed with Rosacea. Now I've just signed myself up as a member of your support group. Your stories scare me at one hand, but make me feel that i'm not alone in this battle on the other.

I've had skin problems for the last four years. Before that I had flawless skin and received compliments over it all the time. It started with mild eczema (after a period of severe stress and hormonal changes) on my face and then came the red cheeks, flushing and swollen cheeks for a long time. I went to several dermatologists, but they didn't 
take me serious at all. I wasn't diagnosed then. After three years of healthy diets, avoiding smoky places and a lot of patience it cleared up for a year. I was so happy and full of life again! But about two months ago the problems started again. Red, severely burning and itching cheeks (no visible veins though!), tiny red pimples and infected spots..Another derm. diagnosed me with rosacea now. 
BUT: my big problem is that my skin doesn't accept anything! It is 
very thin, dry, hypersensitive.. I used a cream from Biotherm, but 
they changed the ingredients recently and now my skin doesn't accept 
this anymore. My derm gave me metronidazol creme, but it burns a lot! 
Now I use it only on the reddish cheeks and separate spots. 
I've tried a lot of cremes for sensitive skin now, but everything 
burns. Are there members that recognize this story and also have this 
symptoms and hypersensitive skin condition that can give me some 
advise?
Could the right cream soothe this or should I start with the 
doxycycline that my derm, prescribed? I'm scared of the side-effects 
and read on your site that it didn't work for a lot of you and often 
worsened it.

I'm pretty depressed by now. I still have to accept that this is a 
lifelong thing. My study results were great till now, and I could have 
a great career I think, but now I'm not able to do anything, except worrying 
about my face. Relationship goes horrible, because he doesn't 
understand my reaction to it....HELP ME PLEASE




Oct 30, 2003
Hello everybody,

I would love to hear some advice from you about the following matter:

My face is burning and irritated for the last three months. (also red spots/ rashes etc. It drives me nuts and desperate!) I have used the metrocream for a while, but it irritates just as much, maybe due to  the lactic acid in it (?). Is there anybody else who has this?

My derm has now prescribed doxycycline tablets, but I'd like to wait with these until it gets really bad.. In the meantime I'm trying to find a soothing facial creme, but since I'm allergic to a lot of ingredients, this isn't easy.
I wonder if any of you could tell me whether or not taking doxycycline makes your face less painful and burny..Or whether just finding a good facial creme could do this..Is it necessary to start with the doxycycline in order to find some relief??

I would really appreciate every response



Oct 30, 2003 
Hi, here's me again.

It's my birthday today and I would REALLY love to hear a response from 
anyone out there on my earlier 'facial cream or doxycycline' question. 
Is there anyone who will share his or her experience with burning/ flushing 
and doxicycline? It would help me out a lot.

sincerely, N.


Oct 31, 2003 
HAPPY BIRTHDAY N.!! Hope you had a great day! Sorry I can't answer your question. I haven't taken doxycycline.  Hopefully someone can answer this for you.
Take care
Melissa


Oct 31, 2003 
Hey N. ..happy birthday!

Well, back on the 23rd of October, I went with a group of co-workers to have lunch at a Mexican Place - big mistake! I got the 'slight sunburn' look over the weekend and now have a full blown rosacea flare-up now. I'm currently taking Doxycyclin (100mg according to the label on the bottle) in the evening, nicomide in the morning and metrogel in the evening before bedtime.

So far I think everything is getting a little better. I had itching and burning real bad a couple of days ago but that seems to have gone away for the most part (still itches a little on the left side of my 
nose). My problem now is really dry skin around my nose (T-zone). But all in all, I think the doxycyclin is helping. I've heard it's supposed to take a couple of weeks to really kick in and a month or more to clear things up.



Nov 1, 2003 
Hi 'creekdawg99',

Thanks for your reaction. I'm glad the burning is getting less and 
your skin is feeling better after using doxycycline (e.a.). Would you 
mind to let me know if it works on the long term as well? And if any 
symptoms are coming back after stopping the medicine?
Or maybe someone else can tell me there experiences with this 
medicine as well?

Thanks a lot,
I had a good birthday after all, despite the burning skin...
N.



Nov 4, 2003 Hi everybody,

I still got some questions left about oral antibiotics. Could you tell me your success and failure stories with them please? Did it clear up redness, irritations, red pimples and burning? Or did it make everything worse? And after stopping? Did everything come back soon or was it a real CURE for some of you? My face is still terrible after three months. Metrocream made it 
worse! It burned for a long time, but after using a new cream that has become better. But: my cheeks are getting more and more red 
patches, that burn themselves and look really 'angry' and red. 
The cream I found is called: Cooling cream. You can get it at the 
pharmacist without a prescription and it contains: 
*cera alba past
*monoleinum
*aqua purificata

Also *rose oil (strong fragrance), but they have taken that out of 
the creme for me. Also there's used *arachide oil (from peanuts), 
which the pharmacists can replace for *almond oil (amygdalae oleum)or 
practically any other oil (jojoba-oil was ok as well).
It may sound as a big task to get this cream, but you only have to 
ask your doctor for a prescription for self prepared cream and that's 
it. Tell the pharmacists if you want to leave the rose-oil out and if 
you want to replace the arachide oil by something else and they 
prepare it for you.
At least: it was no problem in Holland.
There are just no irritants in it! It's soft on the skin, especially 
on dry, flaky ones and smells ok because of the almond (not of any 
importance for myself, but maybe to someone else).
If some of you are trying it, please let me know your opinion! Also 
about the antibiotics please!
N.
(The Netherlands)




Nov 8, 2003
Hi everybody,

Has any of you also got a constant feeling of burning and irritation of the skin? And I don't mean only during a flush, but constant, all day, all week, all month. It is driving me desperate by now. I'm not sure if this had got anything to do with rosacea.. I've got also 
other symptoms (flush, red spots and patches on cheeks etc.), but my skin is sooo thin..I don't know if this is normal for rosacea, so I would love to hear some responses from other members and 'sufferers' here on the net. (especially from everybody who ALSO has this). I have tried some different creams without too many irritants, but your reactions would help me a lot in searching (finding?) a solution with 
the dermatologist.thanks a lot! Hope to read some reactions.
greetings N.


Hi N.
I don't necessary have a constant burning feeling. I quite often have a constant prickly feeling under my skin and yeah the red pimples and red butterfly rash. I'm sure there are others that have 
constant flushing. I think all rosaceans have thin skin. I'm not sure if we were all born with thin skin or whether the rosacea has made our skin thin. Our capillaries have basically grown and come to the surface. What we really need to do is to try and thicken our epidermis making our capillaries further away from the surface and to strengthen our capillaries. With them being at the surface that's why we flush. I'm taking a natural supplement called Rutin which is supposed to strengthen capillaries. I'm hoping this might help. 
Good luck.

Melissa :)




Nov 9, 2003 
Hi Melissa,

Thanks for your suggestion. A 'natural doctor' (don't know the English word for it: works with herbs and acupuncture) had given me Kalium Sulphuricum D6 tablets, that suppose to make my skin (epidermis) thicker again, after long use.. I will try Rutin in time I think. But the first thing I have to do by now is getting my skin a bit more calm I suppose. On my cheeks the structure of it has become dry, scaly and a bit like sandpaper. For three months ago it had just a normal structure. So strange! Does this also sound familiar ? Does anybody else from the group have any suggestions about reducing the pain of my skin? Good luck and thanks for the suggestion,
N.

Hi Group,

When I woke up this morning my face was just fine and actually  looked normal. Now I'm getting ready to go out for the day by shaving, showering, etc. and my face turns a bright red with bumps on my cheeks and forehead. It's a bright sunny day outside and now I don't want to take part in it because I'm so angry. The only reason that I'm writing this here is because YOU understand. Right now I could use some of your encouragement. DO YOU EVER FEEL LIKE SCREAMING TOO?
Charles


Hi Charles

I think we all do!! Oftentimes I get up looking good, and within an hour I'm totally pink, with red patches. Arrrgh!! I slather on foundation and powder then. I'd rather look cakey than drunk. Only 
if I did drink!! :-(((
Nina


Nov 10, 2003
That sounds so familiar...But you should really try to stop focusing on the patches and red spots etc. I've done it for years and only tortured myself with it. Because nobody else really bothered! What did bother others, was the fact that I wasn't myself anymore. The fact that I was so self aware all the time and expected others to see the same as me. Which they didn't! I just saw the red spots, but they saw a sad, but nice looking girl..
So everybody should TRY not to focus too much on the exterior. I'm sorry I did for years, because now I have no problems with the spots anymore, but my face burns so terribly, that I wish I could trade it with the spots...
Remember that you know what to focus on and others see the whole face: your eyes, the way you express/ smile etc. It's the same when you want to buy new shoes or have a specific haircut and instead of looking at the cloths or faces of the people in the street you focus on just their shoes/ haircuts etc. it's all so subjective!! Hope this helps, But, I have to add that I don't know how bad it is with you...
This is just my story. Maybe some of you really have it bad and then 
this story doesn't make any sense..I tend to feel bad because of spots etc. 
and expect others to see the same as me when I look in the mirror, 
which they actually DON'T (In my case). 
N.

Thanks N. for your advice, I try very hard for this not to affect me, but sometimes it is so hard. My case is not that bad, in fact I can control it very well with elidel, but I can't stop thinking how I'm I going to look a few years from now, since this disorder is progressive (at least that is what everyone says). I'm quite scared about it, I'm 30. Take care

Susie 


Nov 11, 2003
Hi Susie,
I've also read here and on several information sites that rosacea is progressive, but a colleague of mine told me that she had the same problems for years and that her doctors told her the disease is just temporary and that it actually was in her case. She is 'clear' by now, at the age of 37. Totally 'normal' again. I'm only 24, so hope with you that it will clear up eventually. There are enough cases in which it did, so think of the positive.
You have it under control, right? That's a major start! (I definitely haven't: I get totally desperate from the ongoing burning and irritation of my skin..). You know a lot of triggers and can avoid them. So why should it get worse? 
Keep the faith and enjoy all the good things! No constant facial pain, less worries then in the beginning of your disease, when you had to search for triggers, solutions etc. That was probably even worse and even more uncertain...
Good luck and enjoy life!
N.

PS. I mean what I say, but know of course what you mean: last night I was dreaming about modelling, partying, putting nice clothes and make-up on and feeling sooo happy and free. Only to wake up with a terrible sore face and more frustration and depressive feelings than the night before...
But it won't make your life better to focus on the things you don't have, right? That's what I try to tell myself constantly at least.. 



Nov 14, 2003 
Hi everybody,

I've cleaned my face a long time with Biotherm sensitive cleaning, 
but my skin gets very irritated by it lately. My doctor says she 
recommends washing my face with bottled water only. I'm doing that 
for a while now, but everybody seems to clean his/her face with 
special soap. Is that necessary? My doc. says that it will build up 
in your pores, even after rinsing it 'of' with water. But maybe water 
alone doesn't clean your skin enough and makes it even more irritated 
and red in the end? Does anybody had an idea about it?
Thanks, N.

I use purified water and cotton but when i see that my face is getting oily or a buildup of skin due to my seb derm i use zinc soap about twice a week. Its been working ok for me. I do this only at night cuz it leaves me pink for an hour or two.

Albert Arenfeld



Nov 13, 2003
Hi everybody,

I've read some mail from a few years ago on this 
board and found some dubious information about seb derm on the face. I know I have this oily, eczema like seb derm. by my nose and
eyebrows, but what does it look like on the cheeks? Oily as well, or can it be dry and flaky (well spelled?). And can it BURN? How do you have to treat it? Is antibiotic ok. for it or do you need something anti-fungal..? Hope that somebody with experience or knowledge about it will respond.

N. (Holland) 

I have had seb derm for a while now. Before knowing what it was or that i even really had a problem I would just rub away all the skin after a shower. I did a lot of damage to some areas of my face that i will regret doing for the rest of my life. I went to a derm with a freshly flake free red face and was diagnosed with rosacea. i was given metrocream and it made me break out like crazy. I tried finacea and it dried me out horribly. It was around this time i joined the group. I was then given a steroid. It worked very well and i thought It was helping my "rosacea" I noticed right away that the flaking skin went away followed by redness. I was horribly informed by my old derm and used it for two months. I became totally red everywhere as opposed to just my old problem areas. I started having flushes witch I never had before and was totally depressed. It was around then i learned
about seb derm. I read posts describing flaking oily patches of skin. I was overwhelmed and thought of how this described my problem from day one. I tried to slowly wean of steroids but when I did stop my seb derm returned all over my face and eyes. It moved up past my hairline and down my neck. I dont have to tell you I wanted to just end everything right there I looked like a monster. I dropped out of school and went for help. finally I found a derm willing to listen and work with me. He said I probably never had rosacea but gave myself a form of it with all this mess. He said i
would need desoin to help at first because it was so bad but then mixed applications with protopic. Things were looking up and I was a lot less flaky. i then switched to elidel and that's were I am now. I'm still red but I'm not flaky and dry. this has been a nightmare for me and I hope it never gets to that
point for anyone. elidel has helped more than anything but it has only been a few weeks. I cant get excited about anything anymore. It destroyed my life but I'm determined to get it back. Good luck and try to find a derm who will listen and be helpful instead of just prescribe shit and make you feel like your wasting there time.


Nov 17, 2003
Has anyone heard of electro-acupuncture?
I talked to some acquaintances last night in a cafe here in town 
and one of them suggested me to avoid 'heavy drugs' like 
antibiotics, 'that poison your body' (severe look on his face, 
eyebrows frown)and try something that helped him a lot with his 
condition (something vague by the way: tired, depressed, head ache.. 
not as clear and concrete as rosacea). gave me the number, I called 
today and this man held quite a disquisition about a medical 
instrument that measures energy in your body and 'tells' you what 
the body is lacking. He will give you homeopathic medicines and you 
avoid 'western' drugs this way.
It's pretty expensive and first I thought the man was a straight 
medicaster/ quack. But I looked on the net here and it's quite well known 
and widespread here in Holland. Did you guys in America hear from it? Does 
anybody have any experiences with it? 
Thanks, N.


Dec 20, 2003
Hi everybody,
I'm struggling with seb.derm. / eczema and rosacea for the last 5 months now. It all started after hormonal changes due to anticonception. It triggered my old rosacea (and I'm only 24!) and seb.derm./ eczema on my cheeks as well. For months now my cheeks are 
pink/red and burning like hell, all day, all night, all week and month..My derm. gave me doxycycline antibiotica, that I started using two weeks ago. My face was pretty pale till then (last months only): but the skin on my cheeks was very rough and a bit 'cracked' and 
flaking. But after a few days on the antibiotics my cheeks became very red..till now it gets worse...I've got the impression that my seb derm is really flaring up because the normal bacterias on my skin are killed bij the doxy...What do you all think? Is this a possibility? Are there people here who experiences the same and can tell me if it's better to stop or continue with the antibiotics? Are there people that had this symptom (more redness after starting antibiotics) but that continued with success?This is going on and on and I feel there's no way out.
I would love to read some responses/ other stories.
Thanks, N.


 Dec 29, 2003 
Hello everybody,

I'm looking (like most of us) for a good moisturizer for ages now. The 
problem is, that I'm allergic to lots of 'harsh' ingredients and that 
most moisturizers are not creamy enough and to much drying. 
Can anybody here recommend a moisturizer that's for sensitive skin
and without harsh alcohols etc, AND that's creamy and rich in 
structure? I've tried virtually every product here in Holland now, so maybe 
there's something for me in the States or elsewhere?
Any advice would be more than welcome,

N.

Have you tried simple oils for moisturizing? Lots on the list have used jojoba oil, purple emu oil, and I use a Japanese skin care line's olive oil (so I don't smell like a salad! ha ha)--that one is dhccare
dot com. They have no added ingredients so maybe that might be an option. You can get the jojoba oil at a health store, or probably an apoteek (or is that apotheken?). The emu oil and jojoba oils are much cheaper than the skin care line I use so might be easiest to try.
Pam in D.C.


Jan 21, 2004 
Hi everybody,

Like many of you I read the messages on this board frequently. After four years of moderate and 6 months of moderate/severe rosacea I think I've found out the following (this counts for me, but probably for more of you):

*redness/ papulas and burning is often worse after sleep: while sleeping my temperature goes up and my cheeks/face gets more red. Try to sleep in a fresh, ventilated bedroom, with not too many sheets.
*After waking up my face can be swollen,especially the site I've slept on (eyelid as well). This goes away after a few hours.
*Rozex/metrogel makes my face burn, even if I put it only on small spots.
*avoid DRY AIR: it makes your face even more dry and in my case I get more burning and more red spots (very soon!). Try to get a humidifier 
if you live in a dry environment: a humidity percentage of 65 is 
perfect.
*Smoky area's are a crime as well (irritation and the next day more 
redness/ burning/ papulas etc. in my case). If you go in there, make 
sure you use plenty of moisturizer/ something a bit greasy even, to 
protect your skin. Helps for me! 
*The low carb diet helps.
*If I'm relaxed and not stressed (even during study/work etc), my 
face is more pale and less irritated. So just relax,everybody!
*Redness/ burning/ papulas increase immediately after drinking/ 
eating something warm/hot or change in outdoor temperature. Avoid 
extremes. 
*Protect your face as much as possible for wind/ cold/ rain etc.
*Don't make the mistake I made after things slowly get better: don't 
start eating and doing everything you want too soon. (It does come 
back). 

Well, off course you shouldn't do all these things if you want to 
continue having a 'normal' life, but I felt much better when I new 
what made it better or worse: just that little bit of control that 
makes you feel not totally helpless.
More suggestions?
N.

Yesterday I was a textbook example of the rosacea/stress connection that Nat mentioned in her post below. I was freaking out at my job as I worked into the wee hours on a huge presentation with 3 of 
the biggest most obnoxious loud mouth know-it-alls who have ever walked the face of the earth. My face was RED...just a bright burning, tight, dry, irritated mass of skin. I felt physically hot despite a normal room temperature. I was miserable and on the verge of flipping out. I finally stood up and said "I need to run a quick errand. Anyone need anything from the grocery store?" As they all 
gave me crazy looks, I walked out the door. I was gone about 30 minutes. It was a clear and frigid night and by the time I got back I felt like a different person. My face was a normal color and all 
the tension and aggravation had vanished. It's sad when you realize that your career makes you miserable but it has solidified what I've known for some time---I really must find a rewarding job that I love instead of settling for one that pays well but makes me crazy (and red in the face) :) 


Feb 1, 2004
Hi all,
I've been taking doxy 100 mg. a day now for 9 weeks. The first month 
my face seemed to be even more red, although the little red spots 
disappeared soon. The second month my skin looked much better: more 
pale again, but my stomach is a mess since then: swollen, bad 
digestion. And my seb dem is getting worse as well, especially the 
yellow places around my mouth. 
Now I've been slowly tapering (?) the doxy: from 75 mg. a day to 50 a 
day the last 4 days. My skin is getting more red again! And all the 
spots are coming back as well. Already.
I don't know what I can do best: continue my normal dose for another 
month (says one dermatologist), or stopping now (says the other).
I know I can't go on with it for a long time. The doctors here don't 
allow that in the first place, but my body doesn't seem to handle it 
too well either. 
Can somebody advice me? Is it normal that things deteriorate quickly 
after stopping/ taking less doxy? And is it temporary?
Is there something else, less harmless for the rest of your body/ 
ingestion etc. that helps with the redness (burning) and red spots?
Or is there a possibility that my skin will stay ok if I continue the 
doxy for another month?
All advice will be more then welcome! I feel so out of control all 
the time, like most of you will recognize.
N.



Feb 29, 2004
Hi all, 
Here's an update from Holland. Since September this year my rosacea  flared up terribly after a very calm year and a half. More `aggressive' as ever, with not only red flushes/ long periods and papulas/ pimples etc., but with almost continuing facial pain and intolerance from the skin to really everything. Extremely frustrating and painful and after many visitations to dermatologists, this is the 
story so far..I took doxycycline 100 mg. For three months. The first two months my 
face seemed more red, but the burning slowly became less. Some days 
it seemed even gone. But I got seb derm and other side-effects from 
the doxy (stomach/ digestive problems etc. All not good for rosacea I 
suppose). Now I got big yellow eczema like areas around my mouth. 
After stopping the doxy (I slowly decreased the dose first for about 
two weeks) the burning came back. Redness too sometimes, but 
sometimes my skin looks a bit pale as it used to...But my cheeks are 
burning like **** again lately. 
My derm told me there's nothing he can't do anymore. I'm not allowed 
to use antibiotics for long periods here in Holland. Only roaccutane 
is an option, but it seems so strong to me... And since the 
antibiotics were no great success after all. I still don't know what I 
can put on my face, tried so many creams and oils the first months.
So, here I am, waiting for Dr. Nase's book and hopefully some advice 
or reactions from you all. I wonder if the burning from my skin comes 
from the redness/ pressure from blood in my facial blood vessels... Or 
if it might be due to something else. Does anyone experienced 
something similar? I take the supplements prim rose oil, vit. C, E, 
Zinc Oxide... Try to eat less carbohydrates, more veggies, fish 
(can't stand meat very well..). No dairy products, no wheat...
I use a cream with only almond oil (soft for skin it seems) and a bit 
of bees wax and emollient in it. The main difficulty right now is for 
me to understand WHAT makes my skin so painful, tight etc. (the 
redness is less important for me at the moment). Is it the flushing? 
Or the creme I use? Why do I react so bad at everything I put on my 
face? Because the trouble is inside and no creme will make a 
difference? But why does everybody on the board then still review 
moisturizers and cremes? Do I need medications or photoderm/ ipl? But 
I feel so miserable right now, can I take the change of ruining my 
life even more with something as `scary' (to me, with my ultra, ultra 
thin skin) as that? All questions....

Some week is better, some week worse for me. But I got the feeling that after a 
great year in 2002, with a new boyfriend, great career opportunities 
etc. now everything is falling apart. Relationship. I can't give my 
total energy to my study, might work and teach at University here 
next year, but am afraid I can't perform as I used to anymore right 
now, in this situation. Can't be the friend I used to be, the 
girlfriend I want to be, the sister and daughter I used to be, nor 
concentrate on the thing I loved best, my study. Don't feel 
like `conquering the world', like I used to, anymore, stopped being 
really outgoing.. Miss my old self so much. Just don't have the 
energy, the ` joie de vivre' anymore, for quite a long time now. That 
scares me, since I am such a different person at heart. Friends and 
my psychiatrist see it differently. That it's my choice to act the way 
I do, that I shouldn't make a drama out of it, go on with life, 
accept it as it is. Well, we all know.... Easier said than done, 
especially when there seem to be opportunities to get things more 
under control. But because the implications on our lives are so 
huge, the consequences might be so totally devastating, I am scared 
trying just everything..
It's just getting all a bit frustrating at the moment, I'm only 24, 
had a few years of emotional and physical misery before due to this disease, 
but if I knew then what kind of symptoms I would get later, I wouldn't have 
bothered that much back then, I think. Anyway, everybody knows the 
effect rosacea has on your self esteem, inner peace etc...

Thanks for reading this all, sorry for the long and dreariness maybe, 
and I hope I can mean something for you in the future.
N. (The Netherlands)



Mar 11, 2004 
Hi all,

Can anybody tell me if ZincO can be used as a moisturizer? I can't stand anything anymore, are reading Dr. Nases book and wonder if ZincO might help to sooth my burning, dry skin. At the moment I don't use ANYTHING anymore for a week ..... Horrible, tight skin.. I will have to order something once more from the United States I'm afraid, but don't know WHAT. Can someone share his or her experience with ZincO please?
Thanks, N.

Mar 11, 2004 
N., 

I use ZincO as a sunscreen, not as a moisturizer. It is a very thick cream, which is not irritating to a lot of people, but I don't think it adds much moisture to the skin. I would recommend purchasing the sample sizes if you want to try ZincO. Linda Sy also has a product for moisturizing called Vita-Oil. It did not work for me, but other people on this forum did like it. Another company (whose products included some moisturizers) is  Rosacea Care (www.rosaceacare.com) and they offer sample kits with a 1-2 week supply of various products.

Good luck. I have also been trying a lot of the products in the book to see what works. Right now I am using a jojoba oil based product from AnneMarie Borlind (www.borlind.com), and I have some samples of her "sensitive skin" products to try.

Marcia


Mar 11, 2004
Hi
Is there anybody from Holland on this board that can recommend me a 
good derm, that knows a lot about rosacea? (and not just gives 
antibiotics and rozex and that's it). I've seen 4 now and are still 
getting worse... Don't have the feeling the doctors here acknowledge 
the problem. Some even tell me I don't have rosacea at all! (acne - 
just a few pimples and what about the redness and burning?- skin 
irritation etc..)
I would really love to find somebody in Holland that can help me 
better.
N.


May 14, 2004 
Hi everybody,

I´m still in search of a ´solution´ for my skin... Antibiotics gave me a thick, accumulating layer of yellow, greasy skin around my mouth and on the cheeks. Honestly: every single week I can take a cotton pad and take off a thick layer of yellow stuff. Underneath my skin is irritated and red then and if I get rid of the sebum stuff I get more red pustules again.. And within a short time it´s back. I noticed that the skin on my outer cheeks (jawbone area and outside half of my face) doesn't have this and actually CAN handle lots of 
moisturizers. Only the problem area doesn't accept anything. 

In Dr. Nase´s book he mentions that it´s wise to get rid of this seb derm (as I suppose it is) first, because it sensitizes the skin even more. Ketoconazolcreams etc. are too harsh. I recently tried a self made cream by the pharmacist with only the active ingredient (ketoconazoicum) in plain Vaseline, but it still burned horribly on my skin, so a no-no, so to speak.. 
Now I´ve got Itraconazol oral tablets (Sporanox). According to the 
list it has a lot of possible nasty side-effects and I wonder if 
anyone of you ever tried this or another oral antifungal medicine, 
like oral ketoconazol. Dit it help the seb derm in the short and the 
long run? And did it effect the rosacea? The antibiotics gave me far 
more seb derm, and I still have it, even after stopping the antib. 
for months. Maybe I get more bacterial skin problems while using th 
antifungal? Are there any experienced people here?? 
Thanks millions,
N. (the Netherlands)


May 14, 2004 
Hi N.

I tried internal Difflucan (fluconozole) to try and get at my seb derm. I didn't find it much help unfortunately. If only because my skin was so sensitive I could only use water to cleanse, so the 
Difflucan did nothing for pre-exisiting seb derm. Probably helped keep the yeast % down. Also though with these internal anti-fungals, flushing can be a side effect. I can't recall if it did that to me, 
but because these medications are so insanely expensive, and a bit taxing on the liver, I wouldn't do it again.
I'm gonna pass on something Dr. Sy told me... Don't even think about putting any actives on burning skin. Actives means it has action and on a compromised epidermis (burning) that's not good... You need to let your epidermis heal before trying it again. 6-8 weeks of minimalistic regime. Essentially to me that means periodic spring water cleansing only and nothing else. Periodic though (maybe 2x a 
week). I know that stinks :( , but too often and water can be irritating...I find particularly in warm weather, letting oil build up just a bit, provides a protective "umbrella" as Dr. S put it while it heals. She actually said having a protective above all else is #1. I couldn't tolerate jojoba or anything so I've done the "nothing" philosophy 2x and it's stopped my burning both times. Not w/o some rough patches cause water alone does dehydrate, but it did work.

Dr. Sy also had an awesome idea: I didn't want to leave actives on my skin all day, so she said to compound the active ( personally when I find a moisturizer, I'm going to try .5% sulfur)into your ok 
moisturizer, put it on at a minimal reactive time (like an hour or 2 after you wake up), like a facial mask, leave on 10-15min, then cleanse with a gentle cleanser you can use (Tolerin Dermo?), and 
imperative, follow with your plain tolerable protective.I would suggest to not use Vaseline as a vehicle for anything. It's mineral oil that unfortunately is one of the oils that turns us red I'd sooner use a moisturizer you know you can tolerate as a base. Presence of dimethicone will help counteract some irritation... And keep the % of active (the anti-fungals, sulfur, sodium sulfacetamide 
etc.)low .5-1%. 
I have not tried her suggestion yets, but first things first-heal that epidermis! ;)

HTH!
Kristen


May 16, 2004 
Dear Kristen,

Thanks so much for your helpful information.. 
I have stopped all moisturizers and medicines for more then three months now and the burning decreased indeed, but my skin is terribly dry and quickly irritated. Also the seb derm seems to expend on my 
cheeks more. I´m still looking for a moisturizer I can handle. I ordered the Complex 15 moisturizer from the US last week and that´s the first thing I will try now. Jojoba oil is only ok on the sides of my face, not on the highly irritating cheeks unfortunately (my/ your??- problem areas..). 

I try to use Vaseline as a basis for the topical nizoral, because I know that on certain spots I can tolerate it. I can see now if I can tolerate the active ingredient on these places. If I do, I can put it later in another, better, base, that I haven´t found yet, unfortunately. I know Vaseline will make me flush more. Do you know 
if this is also the case for the whole face if you put it on little spots by the way?

My plan now is to wait with the oral Itraconazol and try to use more 
natural products first, like evening primrose oil, aloe vera, tea 
tree etc. The oral anti fungal might help (or not, like in your case), 
but I´m pretty convinced it will do something bad for my rosacea and 
acne. Just read a new study on the rosacea site about the role of 
demodex and bacteria in rosacea, and since the tetracyclines made my 
seb derm so much worse, I wouldn´t be surprised if it worked the 
other way round as well. 
I feel very frustrated, scared and out of control often, especially 
when my skin deteriorates a lot in a short amount of time. I feel the 
huge urge to DO something then, to STOP it, but especially when 
you´ve got the Big Three (SD, rosacea and ane-like stuff), it´s very 
difficult.

You´ve got SD and rosacea as well, don´t you? Can you describe what 
it looks like with you (and how it did earlier maybe?). I´m not sure 
if I got the classic thing, so to speak and am interested in what it 
looks like exactly with others. What have you done till now and what 
is working for you? Do you also feel housebound and depressed 
sometimes and how do you cope? 
Thanks, take care, N. 


May 16, 2004 
Hi N.

> Thanks so much for your helpful information.. >
You're welcome....
The all spring water route "nothing" philosophy is the only thing I can count on for sure.. I used Tolerin Dermo for a year w/ no problems, but then had a terrible reaction one day.I used it w/o 
moisturizer which cumulatively left me vulnerable...I need to dilute it too.

> I have stopped all moisturizers and medicines for more then three  months now and the burning decreased indeed, but my skin is terribly > dry and quickly irritated.>
It takes skin 6-8 weeks to recover from an insult, and it's delicate for quite awhile after. Water isn't the greatest cleanser I know, but the right moisturizer would help lift oil and calm. Dimethicone 
is the best to look for.

<I´m still looking for a moisturizer I can handle. I ordered the Complex 15 Jojoba oil >
Sigh-I know. A lot of ppl like Complex 15, but personally I avoid cetyl alcohol.. I don't know what to make of jojoba. I tried it burning, swore it made me burn more.

> I try to use Vaseline Do you know if this is also the case for the whole face if you put it on little spots by the way?>
My philosophy is if one part of my face doesn't like it, don't use it anywhere. 

> My plan now is to try to use more natural products first, like evening primrose oil, aloe vera, tea tree etc. >
I would avoid tea tree. And be careful with pure oil, all oils have constituents,...some which in high % may be bad for a sensitive soul... Primrose is high in E and GLA, which in small % may be good, 
but alone/pure may irritate. Oils are often better as ingredients. I haven't made up my mind on aloe yet either, topically it's said to vasodilate, but it's also anti-inflammatory. Mostly aloe is 99.3% water, and .7% mix of its constituents... Straight from the plant (I burned from it) PH will be 4.2-acidic.. Store formulas are ph balanced... Aloe 99 (a UK brand)has few ingredients.And some have 
liked Aubrey Organics... Ph strips can be bought at http://www.makingcosmetics.com to test.Water is a 7, skin 5.5-6 , so within there is best.

> You´ve got SD and rosacea as well, don´t you? Can you describe what it looks like with you (and how it did earlier maybe?).> 
I do...Uh, when it gets bad, it's really just a lot of sebum build up (sorry for the visual)...Yellowish flakes. Sometimes an area can develop itty bitty little bumps, but nothing pronounced. Mostly it's 
just flakes.

<What have you done till now and what is working for you? Do you also feel housebound and depressed > sometimes and how do you cope?> 
God N., it's been the most devastating thing of my life thus far-stopped it. I've been pretty much housebound for the last 2 years. Sometimes in excruciating pain. ... Some days the depression 
really grabs hold. But I keep telling myself there's a way through to the other side. Ppl have done it..One foot in front of the other, keep going despite setbacks. I have improved.
The Lyra Yag has been a blessing, and clonidine has been key. I don't know where I'd be w/o those... I also have the at home all red acne lamps which I think help...I think a omega 3/6 balance helps 
depression (fish oil, GLA). I reacted terribly to SSRI's.

My best coping mechanism is knowledge is power. The more you learn and understand about how this works-(it's behaviors/patterns, how the bvs work) the better you can outsmart it... That's the only 
comfort I can really give myself...I know I'll never be rosacea free, but I have to believe if heart disease and diabetes can reversed, through action and perseverance, I can get to a point I can resume life. Not always easy to believe..
One of my fav sayings is you can take away everything a man has, but without hope he is nothing. So at the end of the day it's all we have.

I believe you can get better.

HTH!
Kristen




Apr 19, 2005 
Hi all,

I've been taking azithromycin (antibiotic) for about 6 weeks now, pulse dosing, twice a week (250 mg) and things are calming down a little bit luckily. Still far worse then before my IPl treatment in London unfortunately. 
But, I've had intense email-contact with Dr. Soldo, who is very 
positive about my chances of recovering and suggested an intense 
course of treatments, even more then every three weeks and probably also far more then the usual 5 treatments. AND, today I had great news, because my health insurance company has decided to cover the IPL costs I've made in England! I'm really an exception in this and it will give me the opportunity maybe to get treatments with Dr. Soldo covered as well! Since I will have to fly in from Holland all the time I will need this financial cover desperately. Now I will try to get good references for this Lumenis One machine and get medical references that state that I'm laser resistant (or something), but 
that make the necessity clear of going to Phoenix and Dr. Soldo. 
Problem now, part from finances, is whether or not I shall have to 
stay in Scottsdale for these treatments or not. It might be cheaper 
to stay, but like some members already mentioned, it must be horrible 
hot over there in the spring and summer. I probably have to wait till 
fall or winter...Unfortunately. But there is something to look 
forward to again. 

Will keep you posted and hope that others will keep posted about Dr. 
Soldo's achievements.
N. (Holland)



Apr 27, 2004 
Update from Holland.

For a couple of months now I haven't used any moisturizer or cream on my face, as a new dermatologist advised me. She and her supervisor 
thought I don't have rosacea, since there are hardly any broken veins visible. The redness, blushing and burning are due to irritation from so many (different) creams she thinks. She strongly advised me to stop using anything for a while and see how my skin recovers. She warned me that my skin might ´protest´, since I've used creams for so long. It should take months before the skin creates its own protective layer etc etc. People use moisturizers far too often in her opinion and the problems of lots of her patients derived from this usage of creams, in her opinion. So, I´ve been flabbergasted for a week and have tried it for more than two months now (since march the 5th). Soon the burning, that drove me mad for such a long time stopped. But my skin looked so dry (of course). I don´t know if this is the right regimen honestly. My skin looks ok one day, horrible the 
other. I still flush, but not as persistent, maybe because the skin 
can ´breathe´ and the heat can get out. I still have papules and I´ve 
got still seborrhoea (seb derm) around my mouth and at my cheeks. It 
seems to get more dry obviously now.. I try not to wash my face every 
day, so it can heal more, doesn't get more dry every day. I also get 
lots of irritation from dry weather outside or smoke. I don´t feel 
that this is the ultimate solution, since I feel imprisoned like 
this. I see instant changes in my skin all day, depending on food, 
heat, dryness, emotions etc. One moment it can look red, spotty, 
ugly, the other moment pretty ok (despite from the yellow flakiness 
around my mouth: got all sorts of creams (!) for it, just for that 
specific skin area, but they are all too harsh and burn). But the 
burning IS gone, I have to admit that. Only in a flare it's back. 
Are there people on the board that tried to use nothing at all as 
well? Who also just can't accept anything on there face?
I often get scared that this might be my future: hiding in my house 
in the afternoon for the dryness outside, avoiding the places I like 
to come most. I hated the burning and sensible irritation from the 
moisturizers, but now I can't protect my skin to anything anymore I 
feel.

Well, I will go on with this regime for a bit longer, I will keep you 
in formed if the skin might recover more by itself. It´s all about 
patience the doc´s say. I just wonder if this IS a good regime for 
rosacea (I know I have rosacea, other derms told me as well and they 
all seem to think something else: these two also mentioned my (too) 
young age…and we all know..
It´s hard to keep my self-esteem, still I can't get used to this way 
of life and these feelings of anxiety and stress. I look awful 
sometimes, but hope sooo bad that everything will normalize some day 
and I can go to France with a friend, enjoy life despite the weather 
conditions, drink and eat whatever I like. It´s a hard struggle, 
most of all because there are so many different advisers around us. 
And we all want the same..
Any people on the board that know if seb derm, that came probably 
after the long course of doxycycline I took, will go away by itself 
if you leave it untreated and don´t take antibiotics anymore? Or 
people who can advice a mild treatment??

And how many people with dry skin have stopped using moisturizers?
Thanks, 
N.

Hi,
I've always heard that doing nothing will lead to the Rosacea getting worse. A while back I posted a message regarding just that but there were no replies. Probably because no one knew the answer and was hoping that someone else would answer. My question at that time was if you tried something that was unsuccessful is that the same as trying something and being successful? Personally, I would rather try something that doing nothing because trying something at least might give me a shot but that's me. I been using Neutrogena Moisture for Sensitive Skin twice a day since Thanksgiving and my face has looked good with no flareups. My nose and cheeks are still slightly pink but the seb. derm. is gone. But like I said, that's me.

Charles

Apr 27, 2004 
Hello from Canada...

I totally agree with your Derm. I've said this very thing several times on this board over the last couple of years.People are doing more damage than they realize with all these lotions and potions. I 
firmly believe that less is more. I've had mild rosacea for most of my adult life and have never been able to use much of anything on it because of the burning and stinging.I've never worn make-up, for 
example, because everything burned so much that I just could'nt bear it. About 3 years ago when I first discovered this board and Dr. Nase I started using a few drops of Jojoba oil when my face is wet 
and it's the best thing EVER! Can't live without it. The burning is completely gone and the Jojoba is such a good moisturizer that I don't even need to use anything else...You should give it a try...

Jane.

Apr 27, 2004 
I have had rosacea for over 10 years now, and it is only the last year that I have noticed the spider veins on the side of my nose, so it does not mean that you do not have rosacea just because there are 
no broken capillaries. I believe there are lots of people in this group that do not have them.
If a moisturizer burns on your face, then you need to change moisturizers, as your face will not "get used to it". I can see going off moisturizers for a short amount of time, to calm your skin, but I don't believe it is a long-term solution. I find that my moisturizer is actually calming to skin after applying metrogel.As in all posts, this is just my opinion.

Larraine


Jun 11, 2004
Hi everybody,

A next update from Holland. After months of not using any moisturizer on my skin I tried (on little spots!) the next cremes: Biosensitive (burning, has parabens in it..),Jojoba oil, Complex 15 (burned), eucerinum cum aqua (siny, spots and burned). Now I've got a sample from Clinique, but I'm not sure if it will atop the irritation.

I was just wondering, cause I get so jealous from reading post about cremes that work for most of you: are there others out there that also can't use anything?? My cheeks are rosy coloured most of the time and I've got some sd as well. It scares me that I still can't use anything to protect and moisturize my skin, and can only wash my skin 
with bottled water... Am I the only one??
N.

Jun 12, 2004 
Hi N.
I was also really sensitive to any moisturizers. I don't use any moisturizer except whatever is in the metrocream, which is really too greasy, and now doesn't work too well any more to reduce my rosacea symptoms. But it worked for quite a while, and is one of the few things my skin could tolerate and helped the dry skin. I haven't tried the lotion, which might be less greasy. They're horribly expensive though, and don't block sun which is important of course.
-Sue

Jun 12, 2004 
Hi N.

I can only use water too.. Really stinks. I tried pure cyclomethicone since it's light and it messed me up. So not even the silicones are safe. However, cyclo is volatile and dimethicone is 
not. Have you not used anything on your face in those couple months including cleanser? Because if you're burning and use any cleanser, or anything for that matter, the burning won't stop :( Both 
cleansers and moisturizers contain emulsifiers. Burning happens when your epidermis is broken down, and emulsifiers structurally change the epidermis thus keeping the burning going....Wasn't clear if jojoba burned you or not but I assume so. :(

It's a tough and terrible spot to be in... You need to protect a compromised epidermis in order for it to heal. So I either avoid washing with water for several days , yes even water can break down your skin :( , allowing oil to build up thus protecting it a bit more, or you have to find an emulsifier free moisturizer. This has been my impossible quest forever :( .

Oils are all that are emulsifer free so to speak, but they still have acids and stearics...so if jojoba burned I'm not sure what would be ok. Some ppl like emu, others kukui but I don't know if these would burn :( ... They've given some folks issues. I'd avoid anything w/ Vit E like safflower or primrose, and avoid mineral oil or Vaseline imho if you try an oil... There is a product called Barrier Repair by Dermalogica-emulsifier free (except a tad at the end), but I'm hesitant to say what it would do. 
I wish I could be of more help... I'm not burning (now :O ) but upturned flushing is on the brink. Til you have that epidermis protected and healed, I wouldn't use any cleanser but bottled spring 
water. Personally I think doing nothing except water for 2 months is the only way to get out of the vicious cycle.

best wishes-
Kristen




Jun 18, 2004
Hi all,

I wonder how many people have had IPL (Photoderm) treatment for there rosacea while they had seb derm as well and how everything worked out. I have the red cheeks, lots of flushings, burning, am very frequent covered with papulas and have yellow flakes and sebum stuff on my cheeks as well, despite it's dryness.

I con't use any moisturizer, creme or foundation anymore and want to break this ongoing cycle. But some 
people mailed that their seb derm (and rosacea as well sometimes!) 
got worse after IPL. It's so hard living with this right now, that I like 
to inform myself well about the pro's, con's and risks.

Are there people out there that (honestly!) advice me not to go 
searching for IPl in Holland (or Germany/ Great Britain/ VS maybe?) 
I want to find someone who's well skilled..And I'm a student, so I 
don't have the money actually.

Thanks for every response already!
N. (Holland)


Jun 22, 2004 
I've got another question about clonidine and moxonidine: I read 
the usage which scared me a little bit: it says clonidine relaxes and 
expands(dilates) blood vessels. I thought rosacea was caused by blood 
vessel being very dilated, right? If clonidine can control the flushing 
temporally while in the long term it dilates the blood vessels, is
it the suitable drug for rosacea??
N.

Jun 22, 2004 
Clonidine is a vasodilator, but it acts on alpha receptors around the heart, as well as potentially widening thermoneutral zones in the brain, therefore decreasing our potential to flush to certain 
triggers (i.e. hormones)... By clon acting on alphas around the heart, this in turn causes blood pressure to drop. The effect of which is a decrease in blood flow to the upper body-including the 
face. Also, clonidine is said to decrease malar temperature as well as cause a mild vasoconstrictive effect on facial bv's. All things which would assist us.

ACE inhibitors on the other hand, also given for blood pressure, are vasodilators too, but they have a different mechanism of action and would cause facials vessels to dilate.
Moxonidine is more selective. I don't know as much about it, but it acts more centrally within the brain I believe to decrease Sympathetic Nerve Activity. This would be more helpful in theory 
with the more powerful nerve triggered flushes, but some have found clonide more helpful.
Personally, while nervousness is my worst flush, I chose clonidine due to its 3 pronged mechanism of action, and felt it was better for me as a female. It's got a long history of being safe over long term use, and it's given to kids for ADD as well.

HTH!
Kristen


Jun 22, 2004 
Hi all
I took moxonidine for a week or so and it made me pale for a while, but after an hour or 5, 6 I got really red again, and even more than normal in my experience.. After finally stopping the drug it I also had far more flushing for a while.

Has anyone the same experience with moxonidine or with clonidine? Now I'm thinking of giving clonidine a try, because the paleness was so great for a while, but I'd like to know first if you can experience worse flushing after stopping that as well..
N. (Holland)


Jun 22, 2004 
Hi-

You can't take clonidine or moxonidine on an as needed basis, or shouldn't ...Unless you're taking a regular dose and increase the dose on a day, which you should discuss with your doctor, they don't work like antihistamines. You can't take them one day, or even for a prolonged period and then stop suddenly or you will get flushing rebound. These medications must be weaned off of gradually by 
decreasing the dose over a period of time. In my experience, they are taken 2x a day in divided doses to keep a more steady blood level and to avoid spikes. Clon acts on alpha receptors, and mox on selective SNS activity.

I've been taking clonidine for about a year and a half now.. and it's helped me greatly. I started off with .05mg 2x a day, and sometimes take up to .05 mg 4x a day, but never any more than that. Normally I do .05 3x a day... If you're taking it early in the morning, or when you first get up,flushing usually isn't as bad as it is later on.. Clon kicks in in 10 min, reaches effective at 1 hr, and hits max at 4 hours then drops off. Unfortunately these are not cures, so after it drops off, your normal flushing patterns return... Try adjusting the time you take it to better suit your more difficult hours...And also, after taking these meds for awhile, they lose effectiveness. However, clonidine still remains invaluable to me. 

Just be careful..these meds can be wonderful helpers as long as used properly.

Take care-
Kristen 


Jun 23, 2004 

Hi, Are there people who have tried this creme yet? Dermatology barrier Repair.
Kristen offered the suggestion.. It sounds ok. The ingredients of the creme are:

Cyclopentasiloxane, Dimethicone/Vinyl Dimethicone Crosspolymer, 
Domethicone, Tocopheryl Acetate, Citrus Medica Limonium (Lemon) 
Extract, Fumaria Officinalis Extract, Fumaric Acid, Butyrospermum 
Parkii(Shea Butter) Oil, Oenothera Biennis (Evening Primrose) Oil, 
Ascorbyl Palmitate, Bisabolol, Butylen Glycol, Propylparaben. 

Would there be any troublesome ingredients involved???

N.


Jun 23, 2004 
Hi again N.

I had been looking at it but had reservations about the lemon and fumaric acid. Only reason I thought it may be good is since it didn't have any emulsifiers save butylene which was at the end. I got a couple reports from folks who liked it..but they were milder cases I think so I worry about you using it if you're burning. As always if you go ahead do a test spot first.

I'm on the fence about it...I tried pure cyclomethicone (dumb) and had a turned up reaction, but cyclo is volatile all by its lonesome. It broke me out real bad too. Doesn't mean this would it's just I didn't have enough feedback to determine how it would be for me. Curses they have to put nonsensical things in stuff :( . It still remains one of the only things I've been able to consider trying, but be careful sweets.

I can't recall if you said pure jojoba gave you a problem? That's another tempting thing I've stared at for awhile.

best wishes-
Kristen



Jul 7, 2004
Hi all,
I´ve been using moxonidine 0,2 mg, 3 times a day now for about a month. My derm didn´t want to prescribe clonidine, because of the more severe side-effects and till now I have to say the moxo works a bit! I get more pale by it. First I used to get a rebound flush after 6 hours or so, but that was because I only had 1xdays 0,2 mg. and moxo has a far shorter half life as clonidine. But now it seems to help a bit with the redness. (but you still flush in heat or during eating etc., so no miracle medicine). BUT: It might be a coincidence, but I seem to have more red pimples on my cheeks since I use it. I called my derm about it, but he couldn´t find any reference to such in the books and thinks it is a coincidence. Is it? Are there people on the board who use moxo and have the same experience? Beside that, I can advice moxonidine for everybody. I´m more pale and have hardly any side-effects, even though I´m very very slim (only 51 
kilograms).
N.

Jul 7, 2004 
Hi all, 

Another question. Oh, I love this board and it´s members so much and 
can relate so well to everybody's fears, insecurities and stress!! But 
luckily we can help each other as much as possible.
Anyway, I know it has been mentioned before, but I can go to bed with 
a pretty pale face and wake up the next morning with a totally red 

face and lot´s of red pimples all over my face. As a am up and become 
a bit more pale (lately more, since I use moxonidine), some fade away 
more or less, but every morning it´s the same story. I´m always sad 
when I look in the mirror in the morning and after a few hours I get 
a bit more relaxed, since the real acne like red face with red spots 
becomes a bit more egalized. I tried a lot: sleeping with a van (? do 
you call it like that? A ventilator I mean), lot´s of pillows in my back, 
so my head is up high and the blood doesn´t flow to my face too much, 
very few sheets... IT DOESN´T HELP, and my moxonidine neither (heat 
flushes are not in the package). 
The same happens by the way when I study or am intensely busy with 
something. Together with the redness new pimples apear and stay 
often. Is this normal?????
And what can I do about it? (I chew on icecubes, everybody, including 
my boyfriend, think I´m totally mad, with my green rabbit food etc., 
ha ha)
N.

Jul 7, 2004 
I wake up with a hot face and redness. I dont have pimples thankfully. I have been on a search for a COOL pillow... but I have tried feather, buckwheat and the usual..... all to no avail. The buckwht was the best but it was too hard so that hurt my face too. I now have a fan blowing on me all night. I think it helps.
Aimee

Do a google search on the "chillow". I have one. It's quite cool! Good luck,
Beth

 Jul 8, 2004 
Aimee,

I've found over heating in bed to be a significant cause of my Rosacea. I've found sleeping with the bottom corner of my doona folded up, so that the bottom of the bed is just under a sheet to be very beneficial in regulating my temperature at night. My experience has been that it is over heating in
bed overall that is the problem not just the pillow. I can move my feet around into the area under the sheet and stay cool

Sounds a bit weird I know, but has worked really well for me.

Nicole


Jul 19, 2004
Hai everyone,

Another update from Holland here. Things went ok for a while. I only washed my face with bottled water a few times a week and the pain and irritation that I had for a long time using a moisturizer had become maybe 50% less. But lately it seems back. My skin is far more red, dry and inflamed and really doesn't accept anything on it anymore. 
But the dryness and redness seem to get worse by the day. I use moxonidine for flushing, but it only works a bit. I've used a whole list of products (just on small spots off course, unless it didn't irritate). A summary:

-Complex 15 (burned)
-Toleriane creme and fluid (burned)
-Jojoba oil (burned)
-Cutanix for sensitive skin (same),
-ZincO (same)
-sesame oil and other natural oils (burned)
-vaseline
-eucerin
-Clinique products
and probably more.

I've got seb derm as well, by the way.
I wonder if anyone has been through this as well and what is the ' 
prognosis'. I can hardly concentrate on finishing my studies, my life 
is horror often, though I try to stay as positive and outgoing as 
possible. There's this black shade over everything I do. Would 
flushed and dry skin get more dry and painful over time, if not 
moisturized? Or should the body produce the lacking oil by itself 
over time? I really like to hear about this from people who've been 
through it themselves. Or should I eventually just put something on 
it anyway, eben if it causes burning, stinging and flushing? This 
seems a dead end street (do you write it like this in English?).
One dermatologist told me it's best to use nothing in my case, 
another was clear that I have to find something to soothe my skin 
and prevent it from getting more dry and irritated. WHAT SHOULD I 
DO???

Thanks, N.


Jul 30, 2004 
Hi everyone,

My rosacea and seb derm have gotten so much worse over the last year 
and my quality of life has decreased so immensely, that I´m 
considering IPL. Here in Holland there is no rosacea expert. If 
looked everywhere, my doctor searched everywhere, but there just isn´t. 
I´m on the point that my face doesn´t accept anything but bottled 
water now and then. The flushes are getting more severe and come more 
often by the month, my skin is looking more and more horrible...I´m 
totally blotchy, covered with red raw spots, flush all the time and 
my skin is totally scaly from dryness. But as soon as I put ANYTHING 
on it, it will burn like mad. Even the most soft moisturizer or oil. 
I´m on this safety diet (eliminate all potential ´dangerous foods´) It 
has driven me so depressed, but I won´t accept this way of living 
yet. I´m almost finished with my study and my parents and friends 
will try to gather as much money as possible to send me to the best 
IPL-practitioner there is. Whether in England or the US or wherever. 
Are there people who can recommend a great IPL-docter? Maybe Dr. 
Bitter in LA? Or another one?

Thanks so much, 
N. (Holland)


Jul 30, 2004 
I second this, I am not at the point that Nat is yet (believe me though, my heart goes out to you Nat, if you ever need to talk to someone or rant or just vent, you're welcome to send me an e-mail), but I believe it would be helpful to many of us if we got an idea of what the top 3 or even 10 best rosacea docs (whether ipl, photofacial, vbeam, or just good old treatment). Perhaps everyone could submit  their list of recommended docs they have had experience with and give them a rating of 1 through 10. Sounds kinda silly, but I think it's a good idea...
-Alex

Jul 31, 2004 
You don't have to go all the way to the US. I advise dr. Patterson in Danbury near London. I went there four times and I am very pleased by the results. It is expensive, especially when you are stll a student. For me it was worth every penny. 

There is a derm in Amsterdam called De Boer, who does IPL as well. I don't know about the results though.

Good luck,
Lucenta


Sep 6 3:56 AM 
Hi Group,

I'm curious if there's someone who can tell me if IPL treatment 
on the long term can have benefits for not only the flushing 

component, but also for super sensitive, thin nothing-accepting skin..
At the moment I'm using moxonidine for the flushing and it does help a bit, but it makes you feel you're hit by a truck. I had hoped it 
would get better over time, but after 4 months of using it I still 
feel dizzy and tired every day. Not sure if I should continue with 
it and maybe IPL is the last and actual treatment option.
'Since my skin doesn't accept anything except bottled water anymore, 
I'm scared of the thought of laser. I can't put anything on the skin 
after treatment, no calming cremes etc. 
Has anyone experience with IPL and similar skin as mine before 
treatment? Did it have benefits? Did your skin get less sensitive in 
the long run and were you able to use cosmetics after a while? 
N. (Holland)


Oct 25, 2005 
For those of you who have had IPL treatments, what questions or concerns did you bring up with the doctor before hand? I visited one doc's website and they offer IPL but never mentioned rosacea. The 
closest they came to it was saying IPL helps with a red complexion. 

It really is encouraging to read peoples' stories of succes with IPL. I'm just happy to know there is something I can do to get my rosacea under control.
Thanks to everyone for sharing!

Mar 19, 2006 
Hey everyone, has anyone had an IPL experience that went wrong? I am wondering if this has happened to me -- much more sensitive skin and very very flaky, and unable to put on make up or moisturizer anymore without breakouts. 
thanks,
Katherine

Mar 19, 2006 
I would say that is pretty normal. Have you contacted the doctor where you had the IPL done? if so, what did they say? I just had IPL last week and can't put anything on my face either, except the Vichy Spray mineral water. You might want to have extra humidity around you . I have mine going in the bedroom overnight. That helps a lot. Our skin get pretty assaulted with the treatments and it is recovering from the trauma. How it does this, is different for everyone but you have to be patient and drink tons of water. AVOID TRIGGERS IF POSSIBLE !

I hope this helps.
Aimee


Mar 29, 2006 
I have a question for those who have had IPL for their rosacea. Is it routine to charge for the first visit? Just wondering. I have an appointment and found out there is a 75$ fee. Is that right?
Thanks in advance!
mori

Mar 29, 2006 
Hi Mori,

The two derms I have had treatment with did not. The one plastic surgeon I'm considering does charge $50 but it can be applied to the treatment. I have heard that some charge as much as $250!!

Elizabeth


 Oct 20, 2004 
Hi everybody,

I've got some important questions about IPL and would REALLY appreciate it if anyone who has experience with IPL would inform me about this. I've been struggling with rosacea for 5 years now and my life has become a hell the last year (am 25 now, student in Holland). Lately it's getting really bad. I can't use anything on my face anymore and am flushed very often. It's painful and my skin get's more and more dry, since I can't moisturize it anymore (burns too much). Moxonidine helps to reduce the flushing a bit, but makes me too dizzy. I flush soo often and it hurts so much. I can't life a normal life anymore and my skin seems to get more thin and sensitive with time I feel.
I've had contact with doctor Patterson in the UK and he is willing to treat me, but I would like to know something from someone who has already been treated.

Could you maybe tell me something about your experiences?

-My skin is extremely dry and sensitive: does IPL in the long run 
decrease this in your experience? And can I expect it to get worse 
and more irritated at first? 

-For a while I had lots of papulas and infections, but lately it has 
calmed down a bit. Does IPL make this worse in the beginning? I'm 
scared I might have a more irritated and sensitive skin and not 
beying able to calm it down.

-I've got seb derm as well: does IPL make that worse?

-Has anyone experienced his or her skin to become less sensitive in 
the long run after IPL?

Would LOVE to hear about your experiences, since this seems tio be 
the biggest thing I will have to do in years and I would love to be 
well informed.
Thanks, N.

Oct 20, 2004 
Hi there,

I can't talk about long term cause I've only just started IPL but I'll chime in just in case you don't
hear from many others...I've only had one IPL treatment and did find that it made my skin dryer and more sensitive. From what I understand this is temporary though and should reverse when the course of treatments is done. I have seb derm too and have been concerned about whether it will be
made worse by IPL and all the word I've heard on that here is no, it won't, and may even help it some
although probably won't be an ultimate solution. I don't see how it would make p & p worse in the short term or cause infection (unless you're unlikely enough to get blistered and to get an infection in the blister) but I did experience a breakout of odd tiny little pimples in the 2 wks after the tx. Again, a
temporary issue that calmed down in the 3rd wk. 

My concern for you would be your inability to moisturize. All laser tx are considered drying and ppl
are advised to stay well hydrated. But I understand it's a vicious cycle for you -- if you don't get it
done your skin will get worse as it is doing, but if you do you'll have this problem to somehow try to
manage. I wish I had a solution. All I can say is that my skin has not coped well with jojoba oil or other oil formula's (such as Linda Sy's), but it loves the Avene Calming Recovery Cream. I'm sure you've tried it all but if you haven't tried that it might be worth a
go. 

Best of luck, B


Nov 29, 2004
Hi all, another update from Holland. I've been able to get my rosacea a little bit more under control by taking 3 times a day 0,2 
mg. Moxonidine, breaking up with my boyfriend (that relationship gave lots of stress..) and be careful with what I eat. And by using nothing else but bottled water once a day to cleanse my face. No moisturizers or lotions whatsoever. 
Since the moxonidine makes me very tired and dizzy, still, after 

almost a year of use, and because my roscea does continue to cause pain and controls my life to be honest, I decided to go to the UK to see Dr. Patterson. He uses the Quantum machine (IPL) and told about the possibilities and the risks. We made a first appointment on the 5th of January. 
He sounded a bit bored to me, telling about the procedure, and stated that I'm far too occupied with the rosacea. (we had emailcontact before and I sounded very concerned about side-effects, risks, not being able to use calming creams etc.) 
I follow as much postings on the board as possible in my busy 
schedule, but would still love to ask some questions to all who have already had IPL. I'm most concerned about the short-term and long 
term side-effects. It would be great to hear from experienced members 
what is normal to expect. Dr. Patterson only wanted to tell that `the 
treatments might stir the rosacea a little bit up in the beginning'. 
When redness and swelling occur, which I expect, how long does it 
usually take for the skin to get a bit calm again? Dr. Patterson will 
increase the energy levels step by step he said. I should come back 
every 4 weeks approximately. Should I be prepared to be red, 
sensitive, swollen and maybe even bruised for half a year? (at least 
5 treatments, every 4 weeks). 
I would highly appreciate responses. I've just started dating a very 
nice guy and he knows off course about my rosacea (the temperature 
has to be low always in my place, food/ cooking/ going out for dinner 
is always a big undertaking, intimate contact: well, we all know what 
that does to our complexion, right?) In that prospect I also would 
like to know what I might expect probably with redness, puffiness, 
pain, bruising etc. etc. and if there is a possibility I might look a 
bit like now, while taking my moxonidine during the course of the 
treatments.
I'm actually just scared and insecure about it I guess, but in half a 
year I will have to go working (finishing my University study art 
history right now) and this last year finishing my thesis at home 
seems to offer the best circumstances: able to control heat, humidity 
etc..
I've had rosacea already for 5 years and it ruined my college years 
pretty much.
I would appreciate every response highly, 
N. (Holland)


Dec 24, 2004
Hi all,

I'm still struggling with my rosacea: it has become so severe in the 
last years, that I can't put anything on my skin anymore, and it is 
almost constantly inflamed, red, burning and very dry and scaly. But 
every time I put something on it (nothing the last year and a half), 
even a little bit on the side of my face, it starts burning and 
irritating more. Jojoba-oil, everything suggested on the board.. 
When I look at my face close in the mirror, I see signs of dryness: 
scaly, tight, just cracked and dry. I will have my first IPL in a 
few weeks in London, but I've read that IPL might make your skin 
even more dry for a while. 
I've mentioned this problem before, but am still very curious how 
others try to manage this problem. Does the flushing get worse from 
the dryness of the skin? Could IPL break this cycle maybe in time 
and make my skin less sensitive for products? Or is there a change 
that the dryness and flushing and pain will increase after it? The 
thought of the heath that is released with IPL and that will dry me 
out even more freaks me out, to be honest. 
It's unbearable: I just lost my sister a few weeks ago (23, stupid 
appendicitis that wasn't noticed by the doctor and caused 
blood poisoning and heart failure...) and my skin is getting worse 
and worse of course. Normal mourning isn't even possible with this 
horrible condition! It causes so much pain that I can't even keep my 
attention focused on this loss and have to control my stupid 
face.. 
And then I feel so guilty about complaining about it, because at 
least I'm still alive. Hard.
Can anyone maybe give some advice or a prediction for the IPL-
consequences? 
N. (Holland)


Dec 27, 2004 
Papula-clear skin necessary pre-IPL?
I heard from another member, who's also from Holland, that she had great IPL effects while she was on antibiotics and her skin wasn't too infected/ had too many papulas. She advised me to go on it before 
IPL. My first treatment is on the 12th of January, but I'm hesitant, because of my seb derm and bad experiences with doxycycline last year: seb derm went wild and still (!) is not as good as it used to be and doxy seemed to make me more red in general. 
Do others on the board maybe know from if it is better to go into treatment with a clear face? I'm not covered with papulas or something, but tend to have always appr. three or four red pimple like spots on my face, often with a little whitehead. Worse after long flushes and in the morning when I was warm during sleep. 
Does IPL work better when the face is clear? Do papulas indeed get in the way of proper vascular treatment? I just reread Dr. Nase's book, but he doesn't mention any of this explicit in the chapters on laser 
treatment and oral medicines..
I rather don't take the antibiotics post treatment. So if anyone had 
good results with papulas and without antibiotics, please let me 
know. I will take some clarithromycin after treatment anyway, as Dr. 
Nase advice, but for how long is that necessary? A few days to help 
calm things down?
Sorry for all these questions, but I'm getting a bit stressed about 
it, since it's only two weeks away from my 1st treatment 
(scaaaaaared!) and otherwise I might start taking this stuff soon.
Thanks already, sooo happy this board exists!

N. (Holland)

Dec 27, 2004 
Hello,

Actually, a laser physician should see you at your worst -- redness, flushing and papules. Some people respond nicely to antibiotics and this hides the redness and papules. You want the papules because human biopsies show that the dense microvessels are pushed up inside a portion of the papule. The only thing you don't want are pustules because you have to treat around the pus -- so that is the one caveat.

Regards,
Geoffrey Nase


Jan 13, 2005
Hai all, 
Yesterday I had my first IPL treatment with Dr. Patterson in the UK 
(IPL Quantum machine). First it was party time!! I ordered the biggest, most nasty pizza I could find, with lots of tomatoes, cheese, pineapple, things that make me flsuh. Lots of hot and sugary coffee! And of 
course the usual MAJOR flush didn´t appear± just a pretty red face, but not blood red. The treatment was pretty painful I must say, but tolerable. Afterwards I cooled my face for hours with covered ice packs (backs of frozen green peas on my cheeks, strange looks at 
the airport, my mother, sister and I giggling, but not too much because it hurt!). By then my face looked pretty ok. A bit more red, not swollen and the burning subsided within hours. But today after waking up!!!!!!! Swollen like a balloon, cant even put my contact lenses in. Red and rashy.. WEll, is this normal? It probably is, but what experiences do you guys have with it? Does it normally 
subside after ? how many days? Should I continue to cool my face with ice packs again? Drink lots of water or don't? My face has been 
too sensitive for any topical products for years, so moisturizers 
are out of the question.THANKS, I'm hoping things will get better soon. Didn't expect it to 
become so swollen after a whole day! 
N. (Holland)


Jan 15, 2005
Hi group,

I've just started with my first IPl last Wednesday and can't tell yet 
if it's working. Right now I'm still very swollen from the 
treatment. Third day and puffy like a balloon. Not sure if that is a 
good or a bad sign. No bruising or scarring or blistering luckily. I 
feel like I flush even more and easier, but that might be from the 
pressure on the vessels now I'm swollen??

I have the same doubts as some others on the board sometimes: have 
read some negative reports from people that had 8 or 10 treatments 
and didn't get better, sometimes even worse. But also very positive 
reviews, so I'll just have to wait and see and be positive I guess.

How long is it 'normal' to stay swollen? Should I cool it with 
ice packs (and some towels off course?). I cooled my skin after the 
treatment for at least 4 hours and the swelling appeared not the 
first day, but the morning after. Can people maybe give me some 
positive support that this is all normal and that they had great 
experiences with IPL?
N. (Holland)


Jan 17, 2005
Dear Dr. Nase and others:

I've just had my first IPL and now the swelling has gone down I'm left with a intolerant skin that's even more sensitive and reactive and flushed than before. Dr. patterson, who treats me, says it is hopefully temporary. Unfortunately I can't use any moisturizer or whatever on my skin. I have read in your book that you were in this stage as well before you started your Ipl and other treatments. Did 
IPL in the long run take away this over sensitivity of the skin and did your flushings also get worse before they got less? I'm a bit scared because of the intensity and frequency of them now. I can only handle them in a ice cold room, sleeping in front of an open window, eating very small amounts of very selective food and it's making me scared for the next treatments and wondering if this is really just  temporary and if my skin is not too sensitive for these treatments anyway..
Please, If you've got time, let me/ us know if I should continue with this over-over sensitive skin.

Thanks, N. (Holland)


Jan 26, 2005 
Hi all,

I wonder if this Boswellia supplement dehydrates the skin even more, 
since it reduces the sebum production. I have pretty severe rosacea, 
some seb derm as well, super sensitive and dry skin and can't use any 
moisturizers (all stings, burns, causes redness). Tried really 
everything. Now I just had my first IPL treatment: made everything 
worse so far, but I hope that will get better during the course of 
the treatments. Can I safely start Boswellia and should I expect my skin to get even 
more dry??I'm pretty anxious about this all and don't want to take too many 
risks with my skin at this point. But I do want things to get a bit 
better. Well, you all know the dilemma probably. Could someone please 
inform me a bit? And is boswellia safe during IPL treatments and 
while on moxonidine?
Thanks all, N. (Holland)

Jan 26, 2005 
Hi N.,

Actually, the boswellia seems to help rehydrate overly dry skin for me and at least one other. See Dr Nase's post for info on why. Since Moxonidine is an antihypertensive and acts by relaxing and widening (or dilating) the blood vessels, you probably for sure wouldn't want to take calcium which might interact with it negatively. I'm not sure if Boswellia would interact with it negatively, but I'd definitely ask your doctor before trying it. Also, have you talked to your doctor about taking a vasodilator like Moxonidine when you have Rosacea? Could it be making your Rosacea worse? I'm not sure if there are any alternatives though.

Also, I haven't read anything about Boswellia which might indicate it would cause problems with laser treatment, but I would worry about taking anything while undergoing treatment without talking to your doctor (due to possible blood thinning or photosensitivity effects, etc). Sorry I couldn't give you better answers. Perhaps someone else on the group can.
Good luck with your laser treatments. I really didn't start seeing results until a week or two after my second treatment (which I had 4 weeks after my first treatment). 
Dan


Jan 27, 2005
Hi all, 

Can someone explain to me the process of angiogenesis? I had my first IPL a few weeks ago and experience more flushing and redness. I hear very different things though: my general doc. ` believes' in angiogenesis, but since I reacted bad to clarythromicin she doesn't think the related macrolide azythromicin will do much good. The doc who does my IPL, a pretty well known practitioner in the UK, is convinced this reaction is just skin sensitivity and skin adjustment and that it will go away in time. Another derm I used to see a time before told me he doesn't believe new blood vessels grow back so soon after a treatment and that it is all skin sensitivity. But Dr. Nase did mention angiogenesis to take place in the first weeks after laser treatment I thought…? 

Can someone explain me what happens with angiogenesis, if it happens always if you don't take macrolide antibiotics, if my treatments are worthless if I don't take this antibiotics and if , due to this 
angiogenesis, there might be even more blood vessels produced in my 
face then before and if that explains my more heavily flushings? 

I was treated on both sides of my face, also the jaw lines. I used to 
flush only on my cheeks, but flush now all over the treated area. 
Could this be the prove that I'm indeed reacting to the treatment or 
might this angiogenesis had ` effected' this areas as well??

The doc's here just don't seem to have any consensus about it all.


Jan 31, 2005 
Hi all, 

Finally, after three (or 2+) nerve wrecking and painful weeks after 
my first IPL treatment with Dr. Patterson in the UK my skin seems to 
calm down and I actually can say that it looks and acts much better 

then before treatment!
 What a relief! I flush less easily, am more pale, even after eating a bit
too much (happens often.. have to keep my weight up, tend to be verrrry
slender). AND: just wonderful, I can finally, already after the first treatment,
snuggle close to my boyfriend in bed before going to my 'own', more cool
side of the bed and not have a major flush!! And: just a little window open
during night for fresh air is enough, while before I had to sleep in front 
of a big open window to keep the flushing down. And I wake up totally 
pale. Like I don't have rosacea. Normally I wake up red from the 
night and the heath from the covers.

Two night before we were at friends that had the heat on pretty high, 
it was evening (so I tend to get more red: body temperatures rising 
etc.), they had a hot grill on the table(! even more heath) and I ate 
food (just plain chicken and some cucumbers and courgettes and 
potatoes, all in olive oil, no herbs what so ever, while the others 
ate spicy Indonesian and Chinese food.....) BUT: I just was rosy, had 
reddish cheeks, very well noticeable, but ok, not the over the top 
flushings that usually drive me out of the house for a walk in the 
cold air!AND (well, just dwell on it for a bit longer, sorry), I ate a whole 
box of dried Indonesian banana chips yesterday, verrry bad usually, 
and just turned slightly pink! Of course I still can't eat the really 
heavy stuff: pizza's etc, and my diet stays very limited and healthy, 
but there are about 5 or 6 treatments on the schedule, so I'm for the 
first time in I don't know how long excited. I can now face the next 
cooldown time that is coming, with intesn flushing, redness and 
swelling.

Oh, and concerning the papulas and IPL: I definitely have less 
papulas after my first IPL> Just a few littles the day before my 
period, but besides that almost none. 
I also take 3 times a day grape seed extract, which seems to help as 
well.

Will keep you posted and hoping that the second treatment will turn 
out as good as this one.
N.

Jan 31, 2005 
Woww.. My recent post was about the contradiction that I thought existed btw real stories and Dr. Nase's book. I have recevied so many answers from many people about their treatments. Now I am satisfied. Now I think more than 50 percent of rosaceans find a promising relief with laser treatments. Thanks for all who posted about their treatments...
Francois



Jan 31, 2005
Hi, 
I have seb derm around my nose, mouth etc. Not too bad, but yellowish skin and flaking if not treated. Also a bit on my cheeks, but they are too sensitive to put anything on, so I just treat the mouth area: with 2% ketoconazol, put in a non-irritating basis of just eucerinum cum aqua. The pharmacist can make this. So no further ingred.: no alcohols, preservatives etc. Works good for me and doesn't irritate or clog pores.
N.


Feb 7, 2005 
Hi group,

Another, confused, message from Holland. Last week I felt very good after 2,5 horrible post IPL weeks: some relief and I was sure it 
would be all going better from then on. I received positive reactions 
about how good it was to hear and read something positive.
But I want to be as honest as possible: after those three good days 
there have been now 5 bad days..More flushing, sensitivity, redness, 
BURNING, dryness.. It makes me all very insecure about the road I 
have to take now. Tomorrow will be my second treatment in the UK. I 
had email contact with my dr. there and asked about the possibility 
that this increased redness/pain/flushings etc, was part of 
angiogenesis or new blood vessel growth. He wrote back that it isn't 
that, but just a reaction from my sensitive skin (I have also seb 
derm and can't sooth or protect or calm my skin with any topical).

?!?? I'm insecure about this all. I know things might get worse 
before they get better, but this angiogenesis story keeps haunting me 
like a scary ghost. Just like the thought that I'm in worse state 
now then before the 1st treatment and that I can't imagine having 
even more pain and sensitivity after this upcoming second treatment.. 
And what if things get worse and worse? Is this worsening temporary 
or lasting? I flush now all over my face, were the machine hit me, 
while I never used to flush on the sides of my cheeks…All sensitivity 
or have new vessels already grown there maybe??

Ooooh, hope someone can be of some advice, I'm going through hell 
again. Sorry for this not-so-possitive-message,

N. (Holland)


Feb 7, 2005 
Hi N.,
I also thinking about undergoing IPL treatments. I read all your posts. All of what follows are my personal opinions. The healing process starts when you will accept what is going on right now and not fear what can happen next. I think unconscious fear that you can be worse doesn't allow you to heal. I read about mind and body connections. When you put your body and mind under great tension and stress, the healing process will not start. You just delay it. It is only your first IPL treatment and your reaction just can be normal because of hypersensitive skin. It is a long process of healing, a few steps forward and several back. I believe that you will be helped from IPL, it is just matter of time. Sometimes it will take longer than you expected.
Best wishes,
Olga 


Feb 15, 2005
Hi all,

After my first IPL in the beginning of January my skin broke out 
terribly for about 2,5 weeks (lots of redness, flushing, burning 
etc). Then for a day or 5 it seemed really good (posted about that 
straight away..) and then..........weird, but things went worse 
again. Much more flushing, redness, sensory pain. So by the time I 
had to go back to the UK for my second treatment I was flushed all 
over, deep red, worse then I'd ever been actually. I had mailed with 
Dr Patterson about it and had asked if this might be angiogeneisis 
or something. I 'hadn't used clarithromycin or antibiotics. Before 
the first treatment I had used Clarithromycin for 2 days and had a 
bad reaction (red skin etc.), so we had decided it would be better 
to go without it. (have also seb derm, and antibiotics make it 
worse).

So I came in last Tuesday, the 8th of February. He looked difficult, 
admitted I looked worse then before the first treatment. Instead of 
comforting me and telling me this was just normal and a next 
treatment should make things better again he couldn't answer my 
questions. He didn't know why my skin acted so extreme, why it 
looked worse after 4 weeks (and a bit better finally for a short 
while after 3). Said to be honest and that he thought I had an 
extremely sensitive skin and was an extreme case: the worst rosacea/ 
flushing person he'd ever treated. I had asked him in the intake 
session 2 months before if there was a chance that things would get 
worse after a treatment. NO, he had said, it either works or does 
nothing. Based on that I had decided to go for it. Now he said he 
wasn't sure if another treatment wouldn't aggravate things even 
more. He just couldn't predict it with my 'extreme skin'. So it 
would be best to take a break and see if my skin and flushings would 
settle down in time. I asked about antibiotics and he said 
something that bothered me: that there was no proof that antibiotics 
block or prevent from angiogenesis and that this couldn't be 
angiogenesis because it would take far more time for these new 
blood vessels to pop up then a few weeks. 
I was stunned: what about Dr. Nases warnings? I rather believe him 
then this renowned IPL specialist from the UK. But he has seen and 
treated so many rosaceans with so much success.

I was totally disillusioned when I stood outside again: burning 
purple-red cheeks, pain, he couldn't do much for me , didn't know if 
this was permanent or not..

Back in Holland I contacted my doctor about it. She couldn't tell me 
what was going on, if this was irritation or permanent damage, was a 
bit surprised. Two dermatologists that I have visited regular 
couldn't tell, didn't know, don't know what to do next.
So I guess I will sit and wait, with ice cubes and ice packs, for 
Dr. Nase and other researchers to come with a (sort of) cure.. And 
hope things are not too late for me already.
Of course I try to be optimist: luckily it was only one treatment, 
it MIGHT not be angiogenesis or permanent, there WILL be something 
for this in time, I just have to hang in (on?? what is proper 
English for this?).Try to focus even more on drinking water, taking supplements, 
preventing stress, eating healthy (which I all do already, according 
to some in the extreme). My digestion is not that well, so maybe I 
can do something about that without bothering my rosacea. Like Annie 
sang; 'It's a hard, hard life' 

If anyone on the board can say something about it: be VERY welcome. 
I don't have to expect much more from the specialists here in 
Holland, that's for sure. Grateful that this board exists,
N.


Feb 20, 2005
Hi all,
After my first IPL treatment I'm just suffering like ..

Every week my skin seems to get worse;
 in week 3 it all seemed to calm down, but now, in week 6 and since week 4 actually, my flushings are becoming unbearable, despite my normal moxonidine use and general very limited diet. Lately my face is permanently fire red, especially the cheeks and the skin flakes like it is just burned. That's also how it feels, I get shivers from the pain. The last weeks all my former red papules are returned, bright red and infected, in the red cheeks areas. I just look like a clown and feel a 1000 times worse. 
I've seen the IPL treater afterwards and he doesn't know, thinks my skin is too sensitive for another treatment, I've seen every important dermatologist in Holland and they all don't know, except pain medication maybe later (first see how my skin ` calms down' in time).
WHAT IS THIS?
Angiogenesis?? One doc says it only rarely occurs in the first 3 weeks, but my real problems started after week 3.. Others say it 
takes place in week 6-8 and that there is nothing I can do. I feel 
severely burned all day and haven't slept more then 3 hours a night 
the last week due to the constant flushing and unbearable heath 
that's coming from my face. Nothing seems to help anymore: windows 
open, walks in the cool air, moxonidine, ice cubes.. nothing!!

What should I do? Are there others out there with similar 
experiences? DR. Nase, I'm not sure if you're too busy to answer to 
my messages or don't think there interesting enough or just oversee 
them or choose not to answer them, please: This is almost killing me: 
should I get other IPL treatments? In the US? Who is a wonderful IPL 
treater? Dr. Bitter? Dr. Ritchie in Knoxville (or something?) Dr. 
Jay? 
My skin is very fragile, seb derm as well, flaky, dry, constantly 
flushed, PAIN! `m paralyzed by it and it gets worse with the day!
Sorry for this useless message, I know half a year ago I would have 
read it and have thought, `oef, grateful I'm not her, next message!'
Hope there will be someone one this board, on this planet that can 
help a bit, cause this is torture,
On the advice of my mum I'm now going to see a weekend doctor for the 
pain and infections..
Best wishes, N.


Feb 20, 2005 
Hi all,

After a miserable Ipl treatment and severe side-effects I'm looking 
for something to help me get rid of the horrible redness, burning, 
papulas and dryness. My skin is ultra thin, dry, sensitive and IPL 
has been just far too much for it. The doctors I've seen here 
afterwards said they've never seen such an advanced form of rosacea… 
makes me feel horrible, at the age of 25. I'm praying the recent huge 
worsening of my skin and redness and flushing are not due to 
angiogenesis but just side effects that will go away (even though 
they are getting worse every week, now week 7 after treatment).
Wondering if low dose accutane might be something for me. Right now 
I'm on moxonidine. Tried clonazepam for stress induced flushings but 
it was too strong for me.

My questions are: 

*does low dose accutane make your skin more dry? I also have some seb 
derm, but my skin is tight, flaky and terribly dehydrated, which 
might contribute to the redness and flushing (?).

*does low dose accutane help with flushings and redness? 
And if it dries out your face, is this reversible after stopping the 
accutane?

Thanks so much,
N.

Feb 21, 2005 
Hi N.

I feel reluctant to post this as I constantly read of the great success that people have had with low dose accutane.

After my failed ETS surgery, I was a stressed out piece of mess. My skin was the worst it had ever been since I got rosacea. It was full of p&p's, cystic lesions, dryness like you would not believe, 
constant flaking and terrible flushes, no doubt due to the incredible dryness. Because the cystic lesions and pimples were extensive, I was placed on a low dose of isotretinoin, 2.5mg a day.

I was on it for 12 weeks and I regret it more than anything I have tried. If it is possible to imagine, my skin was so dry that I couldn't open my mouth because the cracks would bleed. I had more 
lesions than when I started and I couldn't believe how dry my skin had become. I had such high hopes for this treatment, as it has helped so many  but for me, it just made my skin a parched, disgusting mess. It took about 4 months of IPL to restore the moisture balance in my skin and I no longer have the dryness, so my guess is that once you stop the accutane, the skin will eventually recover. The accutane did not help my flushing at all.

Just wanted to share my story, not to scare you but to maybe help you make a more informed decision. I hope you have more success than I as the majority of people on the forum have had.
Any drug can produce brilliant results for some and horrible effects for others, so this should not put you off. Just make sure it is the right path for you by asking many questions of your doctor.

Good luck Nat.
Mermaid


Feb 20, 2005 
Hi all,

Can someone please tell me how long after IPL the process of angiogenesis can take place? Here in Holland there is no real answer to it: one says just a few weeks, others say that it might take months for sensitive and damaged skin. I would love to have some more clearance about it.

Thanks, N.


Feb 20, 2005
Hello,

The major push for angiogensis starts right after trauma (e.g.  laser) and usually lasts for 7 to 14 days. That is when the major angiogenic stimuli induce vessel growth. After that, with rosacea, cumulative insults slowly cause angiogenesis over months of years, but this is a low level signal and has a small effect.

Regards,

Geoffrey Nase


Feb 22, 2005
Help! Nasty but inevitable warmth-experiment coming! Rosacea isn't 
contagious right?! Boyfriend starts having rosacea signs after 6 months with me..
Something weird and concerning has happened. My boyfriend has 
been extremely considered and sweet with me and my, pretty extreme, 
rosacea needs the last 6 months. Although he is half Indonesian and 
used to `normal' temperatures (20 degrees and higher) he has not made 
a problem sitting in the cold during the day with an extra sweater 
and sleeping in the cold with an extra blanket. BUT: I started to see 
recently that his normal tinted, great looking skin started to get 
red blushes in the morning. And since it is very cold here the last 
months he has blushes (!) when were in normal temperatures with 
others as well. He just called me from work, were people commented 
him about his unusual rosy cheeks and said that he doesn't like this 
development. He thinks that the extreme temperature changes are due 
to this: his blood vessels are overcompensating while in warm 
environments after being used to the cold in his house now I'm here. 
He doubted that rosacea is contagious and that he might have an 
bacterial form of it through me, but yesterday he said his cheeks 
felt a bit sore as well. I am terrified of course! Just this morning 
I was daydreaming before getting out of bed how wonderful this guy is 
through this very rough skin times for me and how wonderful it is I 
can sit here normally, watching a movie with him etc. without getting 
completely overheated. 

His plan: slowly increasing temperatures to more normal values. At 
least he has to find out if his rosy cheeks will go away for him in 
normal and more stable temperatures and he also thinks it might be 
good for me. I warned him that too high temperatures are just no 
option since my rosacea is already so advanced and my vessels are so 
damaged already.
HELP! I'm scared of what is coming: not only for my own skin, his 
health but also for possible problems between us! Has anybody else 
got experience with this?? 

N.


Mar 3, 2005
Hi all, 
I've been trying to order a chillow pillow on the net for centuries, 
but haven't been able to find a company that ships it to Holland. 
Does anyone know what else I can do to get one? It is not available 
in shops in Holland unfortunately, as far as I've been able to 
research the subject.
Thanks, N.

Oh, and a quick update so far: after the first disappointing IPL my 
skin seems to calm down after 8 weeks: still taking moxonidine and 
Singulair for 3 days now (couldn't take the Azythromicin, too heavy 
for my stumach, red rash besides that). Singulair gives me a very 
sensitive and swollen stumach as well, but I hope this will subside. 
Oh, and anither thing that helps LOTS: my dad gave me a humidifier, 
but one with colled and humidified cold air (not too cold), that I 
point at my face during sleep and I haven't slep so great for ages. 
Wake up cooled and pretty pale! What a difference with just two weeks 
ago!
N.


Mar 13, 2005 
H all, 

has anybody experience with fever, rosacea and paracetamol? I have raised a pretty temperature and probably the flu, since it is a whole epidemic here in Holland at the moment, but am not so fond on taking meds: baby aspirin worked very bad for my rosacea a while ago, but 
what about paracetamol? To bring down the fever a bit?

And I guess it is normal, but do others also have so much trouble with inflamed, burning, bright red cheeks when they have fever?

Thanks, N.


Mar 13, 2005 
Hi N.

I found no problems with paracetamol, it does not work in the same way as aspirin, used to know the biochemistry but that was in the 1970s and my brain has not retained the details. A great tip from my GP for my burning face, was to get one of those  sports towels, they look like a chamois in a plastic tube.Wet it and squeeze out a lot of the water. Keep it near to dripping wet. It is very good to press on ones burning face. It stays cool to the feel, except when locked up in a hot car parked in the Sydney 
summer sun. It is less shocking to the face than the gel packs or frozen wet tea 
towels.

Good luck

Mar 14, 2005 
I have a mild fever a month ago and, no, I did not flush. To be  fair, though, I had a stomach virus (vomiting AND diarrhea), and whenever I'm nauseous, all the color drains from my face.


Mar 16, 2005 
Hi all,

Nine weeks ago I have had an IPL treatment in Londen and even though the settings weren't that high I have much more flushing and redness ever since. I flush more easy, deeper, more intense and for longer times. It burns more, is more visible and over a bigger area of my face, like jawlines etc., that WERE treated as well, but where I usually never flushed...This specialist told me I was the first person he knew of that actually came out worse of an IPL treatment. Time must tell, he says, if things calm down. 
My wonders are: there must be more people out there with extreme 
sensitive skin and who are not only IPL resistant, but also came out 
worse after IPL.Please mail me about it: are my vessels permanently
damaged and did my disease go in another, worse stage again? Or
might things in a long term still go down? Who has experience with it? 

Dr. Nase advised antibiotics, but I tried everything and am allergic 
to them...sad huh?
Thanks, N.


Mar 16, 2005 
I've had a very similar experience with Dr. P. My guess is you were treated with the 560 filter. For some reason, some of us don't come out too well with that filter. I would go back and ask for a 590 over the area with decent energy levels. You should get you back on track to at least where you were, but whether you will get good clearance is a 50/50 chance. It's odd because lots of Dr. P's patients come out great with the 560 (check reviews on www.rosacea.co.uk). I think I'm waiting for treatment with Lumenis One or a newer laser. I've come to the conclusion that standard IPL is only moderately effective for me. Seems like there is too much hit-and-miss involved.

Andrew.


I agree Andrew, and for once we will have a system available worldwide so that others are not left in the dark using the argon laser. The Lumenis one is available right now in the US, Canada, UK, Holland, Netherlands, Denmark, Germany, Hong Kong and Beijing. I hope all lasers become available like this for patient choice.

Regards,

Geoffrey Nase


Mar 16, 2005 
Hi N.

I don't really understand why areas without flushing are treated - seems to be a bad idea - particularly when you cannot calm down the flushing following treatment with antibiotics - seems to me like a 
wrong approach. Better to try out antibiotics in advance before jumping into something without having support post treatment. Your whole treatment has been a mess. I would suggest that folks try out clarithromycin, azietromycin and perhaps isotretinoin before they jump into laser/ipl treatment - which often are unsuccessful for the sufferers on this board. There seems to be something called laser resistance - but there seems to be a larger problem of badly performed and managed laser/ipl treatments. Ipl/laser treatments seem to be very effective - but only when carried out by the right person woman - and supported by the right dermatologist.

My personal opinion and observation. Thanks for any comments - I tend to provoke folks a bit - but seems necessary when rosaceans are hurt.

Marc


Mar 16, 2005 
Glad to hear Lumenis One is available in the UK - seems to be the way forward for those who don't respond that well to the current generation of IPL....Has anyone been treated with Lumenis One in the UK or can anyone recommmend a good doctor? (preferably in the London area, but beggars 
can't be choosers!) Also, is it more expensive than normal IPL? (which is expensive 
enough)


Mar 25, 2005
Hi,

I posted several times about my bad experience with IPL: after only one treatment with the quantum machine, 560 filter, double pulse, by a very qualified practitioner my rosacea is MUCH, MUCH worse: it is now 11 weeks after the treatment, I'm sunburned, in a lot of pain all day and permanent red and burning. Really a nightmare story. 
Allergic for antibiotics, so they're no option. Just suffering, especially now the weather is getting hotter here. Who has advice if this will fade or what to do now??? Dr. P. , who treated me, said he has never experienced this before. I went there first for an intake session, did research for at least 6 months and was confinced nothing could go (this) wrong! Now I'm not sure what to do, but I can't stand this enduring pain much longer I'm afraid.
Any advice is welcome, just like 'fellow-experiencers'
N. (Holland)


I have also been contacted by quite a few people following my post highlighting this issue who have had a negative outcome. But it seems that without knowing the specific treatment protocols used and our skin types then it is going to be difficult to identify just what went wrong. But it definitely sounds like it's a common experience amongst many of us, which appears to be having got a lot of air time in recent posts, and maybe merits some research / discussion. 

Ta
Paul


Mar 27, 2005
Hi all, 
After a very bad IPL experience Dr. Nase recommends getting on with 
treatments and find other and better settings. Because of the reaction of my practitioner ('Never seen this 
before', 'not comfortable about going on because not sure whether to make it worse or not') I'm not feeling comfortable about seeing him again. Right now I'm in immense pain daily, and I don't feel I can take this much longer. The red mask is present all day, all night and burns 
my skin off. But after his suggestion I'm thinking about contacting another very good practitioner in the United States maybe. PLEASE, who can recommend 
a good doctor to me? A very good one, cause this renowned Dr. from 
London said he never saw anyone as bad as me.
N.


Mar 30, 2005 
Best Group,

I'm at the end of my forces, so to speak: just went to a doctor again, 
have a bright red mask, for weeks and weeks now, after my first IPL 
treatment 11 weeks ago in London.
Angiogenesis probably, huge 
infections now, bad skin reaction to all sorts of antibiotics. 
Dermatologists all over the country don't know what to do anymore..Dr. 
Nase suggested other IPl treatments, but after what Dr. P'. and did I 
don't have much confidence in him. I'm willing to travel to the end of 
the world, if there is a very skilled practitioner with lots of 
experience with horrible rosacea patients like me.
PLEASE; anyone, give me a good reference. I will contact Dr. Bitter 
SR., but San Francisco is literally the other end of the world for me, 
coming from Holland. 
Any advice is welcome. I'm on Azythromicin now but am still glowing in 
the light, bright red and burning from inside out. Non stop. 
Sorry for this dramatic reply, it's just a bit scary when you've been 
all over the country and they all sit and stare and say that there has 
to be done something but they don't know what..
Thanks all, nat (Holland)


Mar 31, 2005 
Hi, N.

Some people here and Dr. Nase, I believe, have recommended Dr. Nicholas Soldo in Scottsdale, Arizona. I'm afraid that's not much closer than San Fran, though. I'm on the east coast of the US and,
like you, had a disastrous laser treatment and would love to find someone, anyone, who knows how to deal with difficult cases like ours. Hopefully someone here can help.

In the meantime, don't give up. You haven't tried everything yet, and even if you reach the point where you feel you have, research is being done, and something else will come down the pike. How long have you been on the Azithromycin? I've been on it for two months, and this is the first week that I've had stretches without facial burning and stinging, so hang in there with it. I think it will help you in time.

Have you tried Clonidine or Accutane? 

I feel for you. 
Polly


Apr 3, 2005 
Hi group, 

Are there any members out there that have experience with angiogenesis and bad IPL treatments, who reversed there bad state in any way? 
I'm thinking about new IPL treatments, maybe with Dr. Soldo or Dr Bitter Sr, but all the dermatologists here in Holland tell me better not to, because laser in there opinion only stimulates angiogenesis and worsening of the rosacea. I'm very insecure about it, but can't take the daily ongoing inflammation and flushings much longer I'm afraid. 
Even macrolide antibiotics don't do the trick at the moment (am on Azythromicin for 1,5 week now, just as red or even worse!)

Thanks, N.




Apr 3, 2005 
Hi there, sorry to hear you're having troubles. I've had something like 20 laser treatments. Currently, I'm getting aura-i/lyra-i combination treatments, though I will be getting treated with the laserscope Gemini laser later this Spring. Just recently I've been seeing some definite progress with laser.
The things that I'm doing differently now is really making sure I am very flushed beforehand. To do this, I eat around 75 to 100 grams of protein a couple of hours before treatment. I don't take my clonidine that day. On the drive (it's a few hours) there, I do not try to attend/thwart any flushing that comes up. And then about 30 minutes before I take a couple hundred milligrams of Niacin (NOT niacinamide, not the extended realease Niacin). In the office, I run my hands under hot water for a few minutes. This works better to heat up my body than drinking coffee for some reason. Essentially, I get flushed to the point of pain so my face is very red before treatment. Also, I've found that when I go into the doctor flushed like this, he can't tell where the main problem areas of my flush zone are. So I drew a life-size picture of my face and _exactly_ where my flush zone was when my face was at rest (my flush zone is not exactly symmetrical, for instance). I also shaded this "map" of my flush zone so he could see where it was reddest, where it was "pink" and where the more transient spaces of flushing are. For my next treatment, I'm getting one of those translucent form-fitting face masks and I will trace, and shade, my flush zone onto this while I'm wearing it so my doctor can see more of my flush zone over the curvature of my face. I just recently started using Clarithromycin XL 500mg (Biaxin XL) after my last treatment. I'm not sure if this has been helpful or not, but I since I have started using it, my face is looking better. There are of course other factors that I suspect may be helping, but they're a little too detailed and individual to make much sense unless you knew my daily routine (the angle of the fan, for instance, next to my bed). 
Hope some of this helps. I don't think you should give up with laser; try to tweak your pre-treatment protocol and don't worry if your doctors look at you like you're a little crazy. Hope some of
this helps. 

David


Apr 3, 2005
Hi,

I'm taking Azythromicin pulse dosing, 500 mg. three days a week now in hope of bringing back my post IPL, angiogenesis redness and inflammation. BUT: I also have seb derm and know from a former 3 month course of doxycycline that it stirred my seb derm to new hights. How long should I continue this antibiotic in order to break the 
inflammatory cycle? I'm on it for over a week now and no signs of hope yet: still the red mask. I ask you guys because in Holland no derm knows it anymore and when I see a doctor here they ask ME what I want/ need and for how long, what dosage etc. Weird he??

N.


Apr 5, 2005 
Hi, 

Just wondering: it might have been mentioned before, but I hear so 
often from other rosaceans about there bowel problems that I'm 
wondering if, despite the lack of scientific evidence (except with 
Irritable Bowel syndrom and crohns disease etc.), there might be a 
connection.
I will see a specialist soon for my bowel problems: lots of bloating, the 5 
months pregnant look often (while I';m very petite), cramps etc. 
Especially after eating or walking and I'm aware of the good and bad 
foods for IBS. 

And another question: I'm on azythromicin antibiotics recently, in 
order to get my inflammation down a bit, and it stirrs up my bowel 
problems. When I have bowel flares, I have facial flares. What can I do 
about this influence on my 'good' bactteria? Probiotics DURING 
antibiotic treatment or only afterwards?

Best wishes, N.


Apr 5, 2005 
Hi N.,

You may want to keep a food diary for a week and write down  everything you eat and if you bloated from it. My stomach is large  also, but I had fibroids. I'm also on antibiotics for acne, but I notice my stomach "swells" at different times and I'm pretty sure it's the food or drink I've  had. I take Beano with a lot of food, that helps. Also, you may want  to look into taking acidophilus.

Good luck :) Catherine


Apr 9, 2005 
Hi,

I'm wondering if anybody is succefully using Periostat for rosacea redness and flushing? I am on azithromycin and it seems to work a bit, 
but it affects my intestines too much and I can't continue it according to my docter. I would love to use something else to keep the inflammation a bit down...
N.

Hi I came across the below study last night comparing two common antibiotics prescribed by dermatologists for acne rosacea (doxycycline is Periostat).  I'm not a fan of antibiotics due to promotion of systemic bacterial resistance and/or seborrheic dermatitits, but the reality is the macrolides do have strong anti-inflammatory effects. Perhaps the best macrolide to take would be roxithromycin as it has an affinity for the skin, does not kill off friendly gut microflora and has very low side effects. 

I'm aware of no comparisons of the anti-inflammatory efficacies of the various macrolides, so your mileage may vary. Personally, I think roxithromycin is a bit weak, as it takes double the normal dose for me to see a strong effect. However, I really don't see the need to gamble in trying out the other, less-safer macrolides. Both low-dose roxithromycin and doxycycline have other long-term positive health benefits.

The photosensitivity side-effect of doxycycline is a cause for concern.

Logan

Comparison of efficacy of azithromycin vs. doxycycline
in the treatment of acne vulgaris.

Clin Exp Dermatol. 2005 May;30(3):215-20.

Kus S, Yucelten D, Aytug A.

Department of Dermatology, Acibadem Hospital,
Istanbul, Turkey.

Summary Acne vulgaris is a common inflammatory
disorder of the skin. Oral antibiotics are known to be
effective in its treatment. A randomized,
investigator-blinded study was performed to compare
the efficacy of azithromycin with doxycycline.
Fifty-one patients were randomized to receive either
azithromycin 500 mg/day on 3 consecutive days per week
in the first, on 2 consecutive days per week in the
second, and on 1 day per week in the third month. The
other group was given doxycycline twice a day for the
first month and once a day for the second and third
months. Clinical assessment was made at baseline, at
the end of first, second, third, and post-treatment
first and second months. Side effects were recorded.
Statistically significant improvement for the facial
lesions were obtained with both drugs. Neither drug
was shown to be more effective than the other. The
beneficial effect continued until 2 months after
treatment. In the azithromycin group three patients
had diarrohea, while photosensitivity was seen in two
patients using doxycycline. This study indicates that
azithromycin is at least as effective as doxycycline
in the treatment of acne.


Apr 9, 2005 
Hi N

Macrolide antibiotics like Azithromycin are usually the much better choice for the treatment of Rosacea, so I would recommend you to talk to your dermatologist about trying Clarithromycin (another Macrolide) first. It has a very good safety profile and a fast onset of actions. Periostat (generic: Doxycycline, a Tetracycline derivative) has  usually more side effects and is less effective. Additionally, you might wanna check out Noritate (a topical 1% Metronidazole cream; also an antibiotic).

By the way, you can use Clarithromycin and Noritate simultaneously.

Regards
Thorsten

 Apr 10, 2005 
Hi N.,

From your previous posts, I know how much stress you have been going  through and the pain you've experienced. When the inflammatory component is so volatile as it is in your case, sometimes the only way to break the vicious cycle is to treat it internally with antibiotics, particularly the Macrolides which you have been taking. You may want to swap antibiotics, say to Clarithromycin and see if 
you have the same problem with your tummy. 

If you have found that the azithromycin seemed to help you a little, I would suggest perhaps giving it another go and taking a high dose of acidophilus to protect the balance of your intestinal flora. This 
has helped me tolerate antibiotics wonderfully. Perhaps others on the board can advise you about their success with Periostat as I have not taken this, but I think in most cases the only way to know, is to give it a go.

Hang in there N.
Mermaid



Apr 9, 2005 
Hi all,

After my rosacea has worsened badly and my 22 year old sister died recently I've decided that an antidepressant might be needed in my case. 
I just seem to react badly to so many medications, that I would love to hear some recommendations on antidepressants that actually work and don't aggravate the redness and flushings from rosacea..I hope it will calm me down more and make me flush a little bit less. And take away the dark depressive feelings. Any advice is more then welcome,
N.

 Apr 9, 2005 
Hi N,

you might wanna try St. John's Wort. It has proven to be effective against mild to moderate depression, and you don't need a prescription. The safety profile of this herb is also very good; nearly no side effects at all. However, it can cause photosensitization (you can get sunburned more easily) in some individuals. Furthermore, it has some anti-inflammatory actions as well.

You can get it (Kwai/Lichtwer Kira St. John's Wort 300 mg) at Vitamin Shoppe for about $10 for 45 Tabs. The recommended dosage is 3 Tabs a day, so it will last for 15 days. There might be cheaper versions of this herb from other brands, but the most studies were made using this one (from Kwai/Lichtwer). And don't expect an effect after 2 days. Try it for at least 4 weeks, since - and this applies to most antidepressants - it takes quite a time until you notice an effect.

Regards
Thorsten


Apr 9, 2005 
I disagree strongly. I would NOT try St. John's Wort. Sure, you can get it without a prescription, but that also allows you to use it without knowing possible side effects. First, St. John's Wort is an 
herb, so the ingredients that act as an antidepressant are not as tightly controlled as they would be in a medication like Prozac. So, one "batch" may be more effective than another. Second, St. John's 
Wort is basically a OTC version of MAO inhibitors. Go look up MAOIs on the web. Look at all the potential side effects. Look at all the foods you shouldn't eat while taking it. MAOIs have been around a long time, and they just have so many more side effects than SSRIs and the atypical antidepressants like Wellbutrin. I guess we've found another "sensitive" issue for me: just because something comes from natural or is "all natural" doesn't mean it's safer or better. Furthermore, depression is a serious medical illness. Would you try to treat cancer or diabetes without at least some input from a medical doctor?

Copied from another webpage: "MAO inhibitors work more rapidly than the tricyclics. The problem with MAO-Inhibitors is due to the inadvertent effect on another chemical called tyramine. Monoamine oxidase enzyme usually also breaks down tyramine. If an MAO-inhibitor is used, tyramine is not broken down as it usually is, and levels of this chemical build up. Tyramine causes elevation of blood pressure, so an increase in this chemical leads to an increase in blood pressure which could lead to stroke, heart attack, and other nasty side effects. Because of this, people using MAO-inhibitors must avoid foods that are high in tyramine, such as alcohol, legumes (e.g., fava and soy beans), cheese, fish, ginseng, meat, sauerkraut, shrimp paste, soups, and yeast extracts (baking yeast is OK in small quantities).
[..]
So... questions about how St. John's Wort works, but on the safe side, you should avoid all those foods. I guess my point is that, yes, St. John's Wort works, but it has potentially nasty side 
effects that no one seems to know about. Also, as an herb, it's just not as regulated as a presciption med would be, so I would think it's hard to determine if you're getting the correct dosage. Also, 
if you're taking this for depression, it's really best to have some sort of medical or mental health professional monitoring you. I mean, to use an extreme example, if you become suicidal, you have no one there to say, "Gee, you're suicidal. Let's change medications, and in the mean time, let's take steps to protect your safety."

Lastly, I don't know much about taking antidepressants to reduce flushing, but has St. John's Wort been one of those that people has found effective? Most people seem to be mentioning other meds (mostly SSRIs, which St. John's Wort is one step away from as is acts like a MAOI). I'd just do more research before trying St. John's Wort; regard it like you would any prescription medication, which potentially harmful side effects and such.

-Kat



Apr 9, 2005 
Hi Kat,

actually I almost totally agree with you. Never take anything without talking to a physician prior to using it. Unfortunately, I didn't emphasize that in my post. Also, before using any medication or herb, do as much research as you can.

So far so good...but you have to admit that, when it comes to side effects, no matter if it's a medication, a herb, a vitamin or even certain foods, you never can be 100% sure.
[..]
So, talk to your derms about any drug, herb or vitamin (especially the ones listed in Dr. Nase's book, which includes St. John's Wort) that could be helpful to defeat this miserable disease, keep 
yourself informed and be active in your treatment, and don't worry TOO much about each possible side effect. Otherwise, we'll all end up drinking (non-carbonated!) water ONLY,  which consequently will be lethal after about 10 days (well, perhaps some former McDonald's-addicts will make it a week longer).(The last sentence is a joke, of course!)

Regards
Thorsten



Apr 19, 2005
Hi all,

I've been taking azithromycin for about 6 weeks now, pulse dosing, twice a week (250 mg) and things are calming down a little bit luckily. Still far worse then before my IPl treatment in Londen unfortunately. 
But, I've had intense email-contact with Dr. Soldo, who is very positive about my chances of recovering and suggested an intense course of treatments, even more then every three weeks and probably 
also far more then the usual 5 treatments. AND, today I had great 
news, because my health insurance company has decided to cover the 
IPl costs I've made in England! I'm really an exception in this and 
it will give me the opportunity maybe to get treatments with Dr. 
Soldo covered as well! Since I will have to fly in from Holland all 
the time I will need this financial cover desperately. Now I will try 
to get good references for this Luminis One machine and get medical 
references that state that I'm laser resistant (or something), but 
that make the necessity clear of going to Phoenix and Dr. Soldo. 
Problem now, part from finances, is whether or not I shall have to 
stay in Scottsdale for these treatments or not. It might be cheaper 
to stay, but like some members already mentioned, it must be horrible 
hot over there in the spring and summer. I probably have to wait till 
fall or winter...Unfortunately. But there is something to look 
forward to again. 

Will keep you posted and hope that others will keep posted about Dr. 
Soldo's achievements.
N.



May 2, 2005 
Hi all, 

I've recently seen a few well-known Dutch dermatologists and talked with them about my recent rosacea worsening after IPL last January. One thinks IPL might still make my condition a bit better, the others don't recommend it because they think it might make things even worse, especially since my skin is so over reactive and sensitive. I am a bit confused: Dr.Soldo, with whom I mail sometimes, DOES think IPL might make a big,  positive difference. Are there people out there who can relate to my current state and who can tell me about their good and bad IPL experience?
Thanks, N. (Holland)


May 2, 2005 
Hello N.,

Dr. Nase has said repeatedly that you want IPL exactly when your face is at its worst; sensitive and over reactive. That way the lasers can 'see' all the trouble spots and target them.
Dr. Soldo apparently agrees. Those two are experts and I would follow their advice in a heartbeat if it were my face. I have had IPL when my face was an awful mess. My doc too said that was the best time to get IPL Afterwards, things improved rapidly.

Best to you,
Laura in NC


May 3, 2005 
Hey N.

This is my personal experience, so be mindful that others have a  different story to tell. When I had my first IPL, my skin looked like a disgusting freak show.  I had constant flushing, painful burning, papules, pustules, nodules, raw redness, extremely dry and flakey skin etc. At this point I couldn't even use water because my skin had become hyper reactive to everything. For this reason, I hesitated about having IPL with the fear that I  would get worse, just as hesitant and confused as you are right now.

I decided to go ahead with IPL despite my severely sensitive skin and I haven't looked back. I now have my beautiful smooth skin back, so I just have to find a way to treat the neuropathic burning. Now I know how completely different we all are, but in the hands of a skilled practitioner like Dr Soldo, you would be in fine hands. IPL made a huge difference to my poor sensitive skin, so it may be worth a try N.

Good luck with it all.
Mermaid



May 12, 2005
Hi all,

I'm very busy with preparing a possible long term stay in Scottsdale, Arizona to be treated by Dr. Soldo. My rosacea is at an all time high. Apart from having lots of test done at the moment in several hospitals for my yellow skin, bowel, liver, rosacea, flushing etc., the derms here don't know what to do with my rosacea anymore. Moxonidine (highest dose) and azithromycin don't do the trick anymore it seems lately. Hopefully I will know in a few months exactly what is wrong
with me, apart from the rosacea. But what ever comes out, this
rosacea needs to be treated. After 5 long years things become worse all the time, despite my careful lifestyle and trigger avoidance. I'm scared of treatments but people on the board, like mermaid, and others, are convincing me slowly on that I need to take this step in order to get my life back. It is all very difficult to plan it from here unfortunately. Visa for long term stay in the US.. My health insurance company did agree to pay for the IPL treatments with Dr. Patterson in London,UK, but not
with treatments in the US. Their arguments: a) too expensive, b) Why
would treatment in Arizona help when treatments in London didn't? I'm
trying to convince (skeptical) dermatologists here to recommend Dr.
Soldo and the Lumenis One machine for me, but no one ever heard of it
here, so it's quite difficult..Most probably I will have to finance it
all by myself. And since I don't have a job yet, am taking a break
from my (almost finished) studies and have study debts, I will most
likely not be able to borrow something from the bank. My dad and
family are trying to get some extra money, but they already have lots
of debts from the funeral of my sister lately, who wasn't insured
(lol, who is at the age of 22..)it is all very expensive: treatments
(up to 8 or more for me according to Dr. Soldo), flying over from
Holland (at least 700 euro, is about 700 dollar I guess), and then off
course staying there for a longer period of time. Dr. Soldo says I
will need treatments every 2,5 or 3 weeks, about 8, so that will be
around 4 or 5 months most likely. Flying over is way too expensive so
I will need to stay over in AZ.
Because of the temperatures I would like to come around November.
My questions: can someone maybe advice me on the possibilities of
going to a guest family or something? I'm just 25 and staying on my
own in a foreign country, at the other end of the world, getting the
most scary treatments of my life, for 4 or 5 months...Well, IF it is
possible I would love the idea so much of staying in a room with a
family, or some elders or whoever: people from that area, that I can
come home to, help a bit with housekeeping maybe, cooking. That might
look after me a little, little bit. I know these things exist for
foreign students and exchange programs, but so far I haven't found any
info on it here. Does anyone on the board maybe know anything about
this? Or are there people who live in AZ or that area that can do me
some suggestions or know people who might want to help or rent
something for not too high prices?
Ever so sweet Monique offered me to come to her place in Chicago
whenever I want, but I looked at the map and Chicago is at the other
end of the US! So that would cost me so much money again..

Best of wishes,
N. (Holland)



May 24, 2005

Hi all,

I might go to the US this year for IPL treatments with Dr. Soldo. My 'problem' is: I can't really take antibiotics: they make me very red and inflamed for the first days after taking one and after that leave me better for a few days, skin wise. Very confusing. But I understand from laura and others that you need to stay as pale as possible post laser.. BUT I also don't want more angiogenesis. According to dr. Soldo antibiotics are not necessary. According to dr. nase they are, or at least very helpful. What is best???

After London I don;t want even more vessel damage and regrowth etc


Best wishes, N.


May 24, 2005 
Hi N,
There are 11 or 12 major classes of antibiotics which work vs bacteria in various ways, also have different side effects profiles. In most cases, to be allergic to one does not imply sensitivity to another. While the macrolide class (esp. erythromycin) is known to be more problematic regarding drug interactions (effects liver enzymes which metabolize other drugs, thus altering their levels), the class is not known for its likelihood to case severe ADRs (eg. the anaphylaxis rxn 
of the penicillin/beta lactam class). Anyway, if you've had not previous problems taking one...consult with your Dr. about it. the question is, which particular ab caused the rxn?

Regards,

Perry Jones




May 30, 2005
Hi all,

Ive been using moxonidine for about a year now and it worked fine until i had a bad IPL treatment lately. Now my doc wants me to stop with it for a while (!!!!aaargh!!) and try Propanolol. I wonder if there are people who tried both already, or clonidine and can tell me about their experience with it. Wich is working better for flushing and redness?


N.


May 30, 2005 

Hi 
I have been on clonidine for over 4 months now at .1 mg once to twice a day. It helps somewhat, I don't flush as much when I sleep and it helps some with my daytime flushes.. not so much to emotion or nerves etc (flight or fight stuff) I got a script for propranolol (inderal) and have been using it the last three days, for me I think it works much better. AND I am not falling asleep all the time. If I am
anywhere near a couch on the clonidine I am out like a light. In fact I just woke up from an unplanned 4 hour nap. Annoying!

I told my derm last week that the clonidine was making me sleepy- she was unaware that was a side effect (OH COME ON LADY!) And she had issues with me being on the propranolol long term- not sure why. I thought both were lowering BP/HR so whats the big difference? I don't
know...

Hope this helps.
Amanda in Atlanta


May 30, 2005
Hi all,

I've been reading about the Dr. darm procedure and treating patients a few time a week. I wonder who has experience with this. Dr. nases commends on it confuse me a bit. First he responded skeptical to it ('I always believe in telling it like it is. I like Dr. Darm very much, but I think he is overstepping his boundaries with three treatments in 5 days. There is a moderate chance for increased side effects, but just as important, you probably would get the same results with just one treatment because the blood vessels need time to be absorbed by the body. This takes at least 7 to 10 days. The last time we talked I felt as though so may benefit from two treatments 7 days apart...... but certainly not every other day.') but lately he seems to have changed his mind about it ('It has become very clear now that treatment every one or two days may be better for all patients and not just out of town patients.')
can anyone enlighten me maybe? I'm from Holland and might go to the US
for a period of time for treatments, but after my very bad experience
in London and with my much aggravated rosacea I'd love to have the
best treatment of course, like anyone. Maybe Dr. Soldo, to whom I'd
like to go, can think about this new protocol himself if it is
actually working in the positive way dr. nase is suggesting. He also
wrote about it: 'It is not about more money faster (as we are designing several
insurance letters that we will email directly to your insurance
company), but it is about knocking down the inflammatory dermal cells
that promote angiogenesis. These cells release VEGF and cytokines to
tell the skin how many blood vessels to grow and where to send them
to. You can also get much deeper into the vascular bed because the
new vessels have not grown back yet and thus cannot absorb or deflect
energy meant for the deeper vessels.' 

How would this thing be prevented with the more ordinary treatments
every 2,5 week?

best wishes, n

May 30, 2005 
Hello N.,

Yes, I did say that when Dr. Darm started this protocol 9 months ago. It was something nobody else ever did and I did not want anyone to be guinea pigs. But, then I started doing intensive research 
(when I could) on why this might actually be better, communicated with many of his patients that underwent this protocol and helped Dr. Darm refine it. So, I was very cautious at first, but not one person has reported a side effect to me and Dr. Darm is doing 5 or 6 passes sometimes over certain patients every other day and his charges are probably in the lowest 10% range in the Nation. So, start out with caution and then read the literature for more heads up information and push the envelope. I have done this with several treatments or theories over eight years. You do need to be a little flexible otherwise you would be boxed and shelved like many of our derms -- inflexible, closed box mind, and no improvement in treatment methodology.

Good post.

Regards,

Geoffrey


May 30, 2005 
N,

Just a little more follow up on your post. Dr. Darm and I have been talking for over a year literally 4 to 5 days a week when I could. We were comparing notes, breaking news and better laser protocols. 
Several of the laser specialists who focus on port wine stains did the ground breaking work on intensive, short time period -- multiple treatments. They found that they could clear port wine stains that were unresponsive to 20 to 30 different lasers if they treated the skin mast cells and parenchymal cells in addition to the blood vessels because the blood vessels need a "guide" to tell them where 
to go and a "stimulus" to tell them how many branches to grow. So, if you remove the guide and the stimulus, tighten up the dermal architecture with tight collagen and elastin helixes, they found they could completely clear these resistant cases. 

Dr. Darm and I discussed this a long time ago. Then he started slowly treating some patients every 10 days, every 5 days, every 3 days and then every other day. He has treated many patients 3 times in one week with excellent results, several patients 6 times over two weeks and a couple patients 9 times over 3 weeks. He was very cautious, but I also felt it was my duty to put up a small yield sign to wait to see all the patents clearance and remission. So, the patients called me or emailed me and all of the expressed great satisfaction. One gentleman made pizzas by those hot pizza ovens and had to quit his main job because the heat was killing his rosacea. AFter a serious of 6 treatments in two weeks (with the major pre treatment flushing protocols and the new heating pad flushing protocols), his clearance was excellent and his flushing was reduced dramatically -- he's back by the ovens again tossing and making pizzas. We want to always push the envelope and not settle for status quo, but you push in a safe manner. After reviewing some of the recent laser and skin articles it is clear that skin factors must be knocked down and turned off for better treatment. You cant do this if the doctor is waiting three weeks for all the new blood vessels to grow back and then just treat the vessels again. The novel ingenious idea was to stop them from forming again in the 
first place. It certainly is no cure, but it is a protocol that is here to stay and one that will continue to be improved upon. If you ask most other laser physicians I can guarantee you that they will 
keel over and warn you to stay away. That is fine. This is a very natural response to anything so new. The review articles reinforced every thing that Dr. Darm and I were doing and the results he was 
obtaining. The photos and patients speak for themselves.

Regards,


Geoffrey



May 30, 2005 
Hi N,
What I am thinking is that technology is changing and advancing so much in laser tx, that only when certain protocols are tried out 
over time on different kinds of patients, can anyone really tell their efficacy. I think that laser docs are just beginning to understand and scratch the surface on how to best treat rosacea 
patients...I think doctors like Soldo and Darm are making great advances in our understanding in this area. And without someone like Dr. Nase pushing the envelope to educate and inform both 
doctors and patients, where would we seriously be today:) The one week protocol of Dr. Darm does seem to make physiological sense. However, I would have to say I would be scared to death to try it as I have never had laser tx. The fact that Dr. Soldo believes the opposite (that multiple treatments in a week will encourage new blood vessel regrowth as opposed to halt or slow it), is confusing also. But maybe it isn't a matter of either/or and different treatment protocols will work for different people? I read a lot about people that are permanently red or flushed, people that are normal most of the time and have maybe just one or two triggers, then there are people like me that have permanent red blotchiness and transient facial flushing.

Dr. Nase mentioned a questionnaire he was developing with Dr. Darm? I'm not sure what it involves, but I can't help but wish that we could have an extensive study or questionnaire of some kind that 
would examine correlations between different variables and treatment success or failure. It seems to me that different symptom patterns may respond differently to different treatments, and there are SO 
many variables....still there must be some deductions and correlations that can be drawn if only we could get the data to make sense of it all. I am also wondering with multiple treatments in a week, targeting different levels of blood vessels, how does it work in terms of how much is destroyed, how much is left, how much grows back. I'm getting at another issue of tissue oxygenation. How is this affected by multiple treatments in a week? Can too many vessels be 
destroyed? How does the doctor or laser know what and where is enough? Or am I totally in outer space on this one? It's all so very complicated!

So the question of who to choose, in this case say Dr. Soldo or Dr. Darm is difficult because they both have success with their own protocols. All I could suggest is contacting both, and going with 
your gut instinct based on your own individual case, and symptoms. They sound like two great professionals and kind gentlemen so you should feel safer in their hands maybe than someone we, as a group, know less about....just a thought to help you in your decision...

Very best wishes,


Shelley:)


May 30, 2005
Very interesting. Good stuff.

Dr. Soldo offered to treat me every 2 weeks, based on the idea that waiting that extra week only allows further angiogenesis. I think I'll take him up on that offer now. =)
Troy Mulder


May 30, 2005

Hi Geoffrey,

can you maybe explain to me and the others what you
discovered and WHY exactly it does seem to work? For
instance: you said at first you were skeptical with
these short term treatments, 'because the blood vessels
need time to be absorbed by the body. This takes at
least 7 to 10 days.'  Did this turn out to be wrong and could you maybe explain how it does work? 

And is the protocol from Dr. Darm the best or only
really good way to 'knock down the inflammatory dermal

cells that promote angiogenesis. These cells release
VEGF and cytokines to tell the skin how many blood
vessels to grow and where to send them to'?
Or might the use of macrolides and antihistamines and
trying to stay pale after treatments work just as
well?

It is very difficult for me to grasp exactly what
lies behind all these procedures and what happens
exactly.It might help everyone in making decisions about IPL
treatments and treaters.


best wishes, n.


May 30, 2005
Hi-

Dr. Nase-Thanks so much for your kind reply to my questions about future impacts of IPL.
Anyone who has been treated using Dr. Darm's new protocol, or Dr. Nase- What kind of recovery is needed using this method? Are there the two weeks of post IPL flushiness? Do you have to avoid flushing for two weeks after? How long does it take to see results?
Tofuandveggies


May 30, 2005
In conjunction with N.'s questions, what level of clearance, and how long does this clearance last? 
If I understand correctly, this procedure is like trimming back a thicket of thorn branches with each successive treatment. Rather than allowing the branches to grow back after each trimming, you get at the deeper ones with quick-succession treatments. If this approach allows the doctor to get at the deeper vessels (feeder vessels), does this then impact the lasting nature of the clearance patients experience? Taking out the larger vessels deeper in the face would seem to drop the volume of blood flow that goes to the face, which would in turn lower the angiogeneic signals. But I don't understand how our rosacean genes interact with this newer method of treating in terms of how fast vessels re-grow. I guess at the heart of this question is: if one were to make the commitment to travel to Dr. Darm for series of treatments, how long could one reasonably expect this to last? And, could clearance then be maintained by periodic treatments from a laser doc closer to home? I realize the answers to my questions may not be known yet as this is an ongoing process of research and trial and patient follow-up. But do you (Dr. Nase) have any preliminary results that might speak to
these questions? 

Thanks very much,


David



May 30, 2005
Hello,

So far he has never needed to cancel an every other day session. 
There is always mild redness and swelling, but not the degree that 
stops the treatments. Its actually quite fascinating because the 
vessels treated in the previous session are still in the skin, but 
are dead and thus are not a target (they do not carry oxyhemoglobin anymore). So far the results are usually noticed within the second treatment, continue through all subsequent treatments and continue for several months after the last treatment. After the final treatment you should avoid flushing as best you can, but he will supplement his treatment with clarithromycin or clonidine to help. Just like any rosacea sufferer, some will experienced vasomotor responses by the new vessels that make them more sensitive for a while, while others do not (I dont think we will ever be able to predict who will transiently respond like this, but it will diminish).

Regards,

Geoffrey


June 2, 2005


Dear Dr. Nase and others,

as many probably have read form my many emails on this subject, my rosacea worsened dramatically after my first and only IPL treatment in January this year. Together with Laura and others I have come to the conclusion that it is most probably due to the use of a 560 filter, double pass (on the Quantum machine). According to laura and Dr. Soldo this filter has send too much heath in my very weakened and fragile skin too soon and I might consider more IPL treatments where we start with a deeper filter and work our ways up, thereby not weakening the epidermis even more. 
Like Jen unfortunately is experiencing recently, I also burned and flared and flushed non-stop for at least 2 months, but still, after 5 months, my flushing and redness has worsened probably 300% compared to the situation pre-IPL, I would say..I think the fact that I COULDN'T
stay pale after the treatment resulted in the sending of too many signals to the vessels to form new ones.

My question is: HOW can I prevent this from happening again in the
very near future? Macrolides and every type of antibiotics (and I
tried them ALL, several times) make me very red, so that doesn't seem
a great option I guess (want to stay more pale, right?)
My skin doesn't tolerate even the calming gel mask (had a sample form
Dr. Patterson in January, put it on before the treatment and it felt
like it burned my skin off: was red on that side of my face for more
then a day). It was the same mask that people have posted on recently
here and that seems to be so good.

What can I do, apart from sitting in front of a van and having
gel packs at both cheeks, don;t stress and eat as little as possible,
to prevent neogenesis and make next treatments a bit more successful? 

(Soldo might treat me every 10-21 days, depending on the state/
condition of my skin).

This is a great worry for me, and I would highly appreciate any
advice, since I virtually will stop my life here in Holland, for as
far as i haven't yet, and will have to stay a longer time in the US.

best of wishes,

N. (Holland)




June 4, 2005
Hi Francois,

As far as I know seb derm also gives a red skin, but
it is more of a permanent redness, while rosacea can
aggravate and calm down in the wink of an eye by your triggers. I have both, as you already know from our long email conversations, but as far as I have learned from this board you can treat the rosacea with IPL even if you have seb derm.

I was only recently officially diagnosed with
rosacesa, after 5 years of misery. And by officially i
mean that I have had tests on ALL the diseases that
include any form of facial flushing whatsoever. two
years before that I was diagnosed with rosacea
already, but without any tests. The doc. just
recognized it straight away. From what I know you can identify rosacea pretty well by facial flushing from triggers like heat, alcohol,spices and emotions. Dr. Nase mentions a few other
diseases that can be the reason for flushing or that
can aggravate the excisting rosacea: hyperthyroidism,
mastocytosis, carcinoid Syndrome, Pheochromocytoma,
Lupus, Allergies. You can ask your doctor to rule
these out and give you tests for it. (see pages
103-105 of dr. nases book)

If your Turkish doc doesn't want this you might be
able to get these tests when you visit Holland, as I
know you will do in the summer probably. Just maybe,
I'm not sure, but I will do my best for you, you know
that.


N




June 13, 2005
Hi all,

Since a week I have intens burning, scaly, red eczema on one cheek and my chin, on top of my severe rosacea. It started quickly after a visit
to the hospital for a colon treatment and after a lot of meds. I received there. It not only is very painful, red and burning, BUT, Dr. Soldo mailed me
that we have to postphone IPL treatments now because I need to have all other skinconditions under controle before IPL!!!
My rosacea already was killing me and now this!
How do I get rid of this eczema? Cortisones are no option, cremes
neither (face too sensitive). I NEED those IPl treatments, WHY DOES IT
SEEM LIKE SOMEONE IS AGAINST ME AND GIVING ME A HARDER TIME EVERY TIME?!


best wishes, n

June 13, 2005
Dear N.,

I really feel for you -- you've had such a lousy run. I don't have much to offer by way of suggestions as eczema has never been a big thing for me, but I do recall a few people in the group talking about a cream from here in Australia called Hope's Relief. It's a gentle all natural cream for eczema and psoriasis but some were finding it helpful for rosacea. I bought some and tried it and it didn't seem to do much for my rosacea but my skin tolerated it well and it certainly didn't do any damage, and maybe it would help with your eczema. I think if you do a search for it online you'll find the site and I'm fairly sure she ships overseas. 

If I were you I'd also go to a good naturopath or other alternative health practitioner and see if there
are supplements or dietry changes that might help. Sorry I can't be of more help. I do hope it calms down soon and that things turn round for you before too long. 

Cheers, B

June 17, 2005
dear n,
i know exactly how you feel, i constantly battle with eczema on my face as well as rosacea. the only thing i have found that controls it is elidel cream. it has been a lifesaver for me. i also use aqueous 
cream, both as a cleanser and a moisturizer. hope this helps,

b




July 14, 2005

Dear Dr. Soldo,

First of all it's great to see you on this forum. I have a question for you, that I know some other people are dealing with. Do you think it is ok to use anti-inflammatory and vesselstrengthening supplements like Alpha licoic acid, grapeseed extract, pycnogynol, Esther (vitamin) C and flaxseed oil? They seem to help a lot of people,
including myself. I'm not sure if they have any negative effect on the IPL (or more on the blood vessels of course). Would you advice someone to keep taking them or to stop and only before or also after IPL? They might help with the inflammation..
Best wishes, 
N., Holland

July 14, 2005
-N--So nice to hear from you--I have no problem with any of the supplements you mentioned especially if you feel you are benefiting from them--And I have no strong feelings about stopping any of them prior to IPLs--Always good to hear from you

--DR S



July 15, 2005

Hi Bidget,

I haven't used anything on my face since march 2004. 
When my derm suggested it (demanded it more actually), I was shocked. I had used moisturizers since my puberty . The first months were hard: very dry skin, very tight feeling,still flushing but my skin wasn't shiny anymore . After a while my skin did calm down and became less dry. That is the natural reaction of your body. And I do flush a lot! At least 8 times a day, for long periods of time, which make my skin even more dry. But still: right now my skin isn't very dry, just a bit and as soon as I put any topical on it it starts burning and I flush immediately. And I did try
the most gentle and best tolerated stuff for rosacea
according to Dr. Nase and the formums/ boards.

I try to drink enough water and if it gets very dry
outside I use a humidifier inside. around 55 or 60 %
humidity is perfect for me. Too high makes me flush
and too low as well. Hopefully I will tolerate moisturizers again after
IPL, but right now this is the best regime for me. 
Mail me whenever you want if you want to know more ok?

best wishes, N



August 2, 2005
Hi all,

I've been on moxonidine for more then 1 year now (0,6 mg, divided over
the day) but it seems to have lost some of it's actions to me. I got
clonidine from my doc to give it a try and on the packet it says
`Clonidine HCI 0,025 PCH'. I should take 2 tablets twice a day.
I wonder if this is enough. The maximum dose of moxonidine doesn't
work for me anymore, so this is actually a low dose of clonidine I
have been prescribed I believe. Should 3 tablets (0,075 mg.?) three
times a day be too much?

I took the prescribed dose two days and had horrible flushings and
also after it. I wonder if this rebound effect (hypertension after the
drug lost it's actions) can appear this soon and quick? And what can I
do about it if it won't help me a s well as moxonidine? Taper off and
in between start using moxonidine again to make the side-effects of
the cutting down of the clonidine less?

My flushings are really bad and uncontrollable some days..

Hope someone can give me some advice,


Best wishes, n



August 3, 2005
Hi all,

I'm a bit confused. I have had a very bad IPL treatment in January with lots of new vessel growth and my roacea is on an all-time high. I didn't take antibiotics then. I will get treatments in November in the US. Macrolides make me more red. I don't take them normally. But I'm
afraid this neogenesis will happen again if I don't take them. How many of you are doing well without during IPL and how many actually do take them? Would they still be beneficial, even though they make me more red? Or would that redness itself activate new vessel growth maybe? 
I'm not sure what to do. My flushing and rosacea are now very bad and often uncontrollable. I take moxonidine.

Thanks for listening, 

N


June 26, 2005
Dan,

"(i.e. antiinflammatory and antioxidant supplements may lead to a dampened immune response to pathogens, etc.). " Having said that, What are your thoughts on the long term use of GliSODin? (I have been taking GliSODin for about 8 months now)

Matt.


June 27, 2005
Hi Matt,

How are you doing these days? Your question is a really difficult one. The positives likely
include reduced peroxynitrite and reactive oxygen species (ROS) which may help prevent much of the tissue damage and negative symptoms we see with inflammatory disorders like rosacea, but the negatives likely include risk for increased pathogen burdens. Here's a great diagram on the positive and negative impacts of reactive oxygen species (ROS) btw:
http://www.cellscience.com/Reviews2/Nindl3.jpg

As you know I'm certainly no expert, but personally, I think it really makes sense to be watchful for any signs of increased infections or +worsening of symptoms, etc while you are taking GliSODin. But remember that most standard treatments for rosacea (and other inflammatory disorders) today involve the use of anti-inflammatory agents, and the same warnings should probably be heeded for all of these agents as well...

Take care...
Dan



June 24, 2005
Hi Dan,

Thanks for your words of wisdom and your good wishes, which are warmly reciprocated.
We, too, prefer to get our nutrients as naturally as possible. Apart from essentials like hokey-pokey ice-cream, we concentrate on foods high in antioxidants. There was an interesting little throw-away line on the TV news last night. New Zealand has high UV levels (from being under a hole in the ozone layer). Apparently, this has led to NZ produce having higher levels of antioxidants, presumably as the plants try harder to protect themselves from sun damage. Clever plants! :) 

Kind regards,

Aurelia


August 3, 2005
My understanding is that with IPL they start lower and build up the energy as they go so that by the time you're up to 4,5,6 tx you're at much higher settings than you were at the start, which accounts for why many flush more and look worse after treatments as they go along. For the lucky ones it seems this is temporary and it all calms down to an overall good response. For the unlucky ones (may be luck, may be that the practitioner jacked the energy up too high too fast or made some other ill-advised choice) this extra reactiveness can prove to be a permanent or semi-permanent thing. It seems some who get this do see a calming eventually but it may take many, many months. Others say they have just downright been made worse. Of course we must not lose sight of the many
who get great results from IPL/laser, but I guess this is the reality -- noone knows for sure how their own skin will react and everyone who wields this technology does so in their own way and the
combination proves unpredictable. I certainly hope though that you see a calming at some point and from what I can tell there's at least a decent chance of that. 

Cheers, B



August 4, 2005
I have had 6 IPL with Dr Lai in Sydney, Australia, and am now being treated with Genesis by Dr Tony Prochazka. I did experience some temporary increased reactivity from about the 4th IPL tx, but I was speaking more from my observation of the range of experiences that people report. 

Cheers, B


August 4, 2005
Hi Bibi, 
as you know this definite worsening happened to me.
It has been a horror ever since my treatment with the
Quantum machine , 560 filter double pulse. Do you know 
if the chances of pushing the worsened
symptoms back with new IPL treatments are there? I
can't life with these horrible flushings. My last
IPL was in January, more then 7 months ago and things
are still getting worse by the month I think.
What do others who had bad IPL's after it usually?
best wishes N.


August 4, 2005
Hi N.,

Yes, I do recall your experience, and know that there are a number of people who have reported problems following use of Quantum 560. I would really like to know if these problems are associated with Quantum 560 only, or any IPL device at a 560 setting. I'd also like to know if the problem is associated with this setting on all pulses, i.e. single, double, and triple, or just one. Anyone know? And I'm sorry N, but I'm not sure if and how this adverse reaction can be treated. Weren't you hooked up to be treated by Dr Darm or Soldo? What did they say about this question? You probably know they are both kindly answering questions on the board so maybe you should put it to them. Seems we still have more questions about this issue than answers but I really do hope and pray you find some relief somehow soon. 

Cheers, B



August 8, 2005
Hi all,

I've read a lot about the red lamp and can borrow one to give it a try myself. My rosacea and flushings are very bad at the moment and I haven't slept for days because of the burning pain and flushings lately. 
According to Peter and Kristen (and all the recent posts here) it should help a bit with the inflammation etc. I just have made an appointment for IPL treatments with the Lumenis One in November though. I believe Aurelia wrote that stopping with the red lamp after
a build up time might worsen your condition again. 

So my question is: is it better to wait with the red lamp till after the IPL's or is it possible to start trying them now and CONTINUE them during IPL. (IF they work for me of course, I am very unsure about that as well, because EVERYTHING made me worse so far, except
moxonidine). I don't want to start with it just to find out the Red lamp might work
and then getting much worse during IPL because I'm forced to stop with
it during IPL treatments..I did hear from some that it might help with
the IPL to calm the skin down again, but I'm not sure about that and
would like to know if this is the case before I start with anything at
all.


Thanks so much and best wishes, n


August 9, 2005
The red lamp isn't too warm, really, and you can use a sprayer with purified water to mist your face while you do your session if you feel like you're starting to flush. I know how touchy things can be when one's skin is so sensitized.

I've been using mine along with the laser treatments I've been getting. I've seen no ill effects--it
actually seems to speed up my recovery from laser. I don't know what your subtype is, so start out with 10 or 15 minutes a day, maybe. I saw that my face was calmed after using it. And once I saw this reaction, I started moving up to where I'm at now with 2 20 minute sessions a day. Hope it helps you. It will take a few weeks for you start seeing any results--if it's helping. Something to try, for sure, if you haven't been able to find help through other treatments.

David


August 10, 2005
most replies on the lamp/IPL question were positive, for instance this message from Bibi:

I asked around a lot about this and from what everyone says it seems it's fine to use the lamp right up to and after IPL. As you say there is ever some suggestion that using it post tx helps the healing but
I can't say how accurate that it. I've certainly had no problem doing so that I can see. Good luck with it all N. I know how rough a time you've had and really hope things pick up for you. 


Cheers, B



August 9, 2005

Hi all,

I read something disturbing (to me) on the rosacea forum about the use of a fan. Someone wrote:

'So, I have started using a small fan to help keep my face cool. Is there any danger to having a fan blowing on your face 24/7? I find it really cools my face down, but as soon as I am not behind a fan I get a very bad flush for 30 minutes to an hour.'

And later:

'To follow up, I talked to my doctor today. He said that direct
contact from something like a fan for prolonged periods would cause skin irritation similar to direct contact with ice packs. So my 4 day experiment with fans is over. It was nice though, when the fan was on my face face it looked like as if my rosacea was completely gone.'

I wonder if this is correct. I use a fan and it helps me through the day. I know many who use it. I thought that if you put it on a
distance of approximately 2 or 3 meters from you and not too hard, it
just cools the face like the wind outside and it should not damage the
skin? I can imagine it slightly dries the skin, but what to think
about those bouts of severe flushing?? They inflame the skin, dry it
out, damage it...Wouldn't a fan be the best option of 3 (flushings,
ice packs or fan)?
What do you guys think of this?


n


August 9, 2005
This is disturbing and I have worried about the use of the fan on my face. I know that elements like wind can effect rosacea. It's mostly at night that I'm addicted to the fan. It just seems like a lose lose situation.
Annie Slote


August 9, 2005
I have no idea about the irritation factor. I guess it's something to consider. I use a fan at work, either intermittently on my face, for short periods, or blowing in the cubicle so that a breeze is generated, but not blowing directly on my face. At home, I have a fan across the room that oscillates so it is never blowing on my face for long. But I have noticed if I park my desk fan close to the computer and blow it on my face for a time, I'm a lot pinker than if I didn't use it. (Our office is usually chilly so that may also be a factor). I have generally oily skin, so I have never noticed it drying out my face. At least not in the summer.

Guess I will make sure I continue to use the indirect breeze "method" of my desk fan. I'd never really thought about it! 

Pam in DC




August 10, 2005
Hi all,

I got some private messages about my fan question and I heard from some people that they are interested in the suggestions I got as well,
so here is a small summary of the replies I got.
There seem to be a lot of people who do get more intense flushing after the use of a fan, but for others it seems to work very well.
There doesn't seem to be any reason to worry about damaging the skin while using it, especially if you don't sit straight in front of it
luckily. I've been experimenting a little bit the last days and for me it works
better to do use it I believe. Especially studying and working and
writing behind the computer is only possible for me while using a fan,
but I have a large one that I put about 2 or sometimes 3 meter away
from me, so there is a comfortable and cooling breeze. Not a storm,
because that does trigger my flushing. The same for sleeping or
cooking or just chilling out while watching a movie. It doesn't
prevent all my deeper bouts of flushing through the day or week, but
at least some of them and it keeps the burning pain a bit at bay.
(hope this is the right expression, you guys know what I mean probably).

Thanks for all the replies, 
N




August 14, 2005

Hi all,

I'm having a bad time lately (again) with very uncontrollable and painful flushings. The doc. prescribed me an anti-depressant named Amitriptyline, that is used for nerve pains in small doses. Side-effects can be hypertension and it can effect medicines like clonidine and moxonidine. 
I wonder if anybody is familiar with this drug and has good or bad experiences with it?
I can tell all I want about rosacea but usually docs don't really
listen to me and give the med anyway. A while ago I had an colon examination for example and they gave me morphine, of all drugs. Even though I almost refused to take it (flushings!!). Intravenous and it gave me the most horrible flushings ever. Like to avoid this if possible next times…

Thanks,
N


August 15, 2005
I used this as an antidepressant for the better part of a year. Some of the side effects were weight gain, hair loss and changing the taste of  certain things. Ugh. It didn't seem to make any difference one way or another with regard to my rosacea when taken orally at an antidepressant dosage. 
Nona


January 30, 2007
Hi everyone,
I just got back from a new derm who wants me to try this drug for my flushing/burning. I looked it up and it has lots of side effects(they all do I guess). Has anyone used this drug or heard anything positive or negative about it?
Thanks,
Melissa


January 30, 2007
Melissa,
For many reasons, I run the other way when this drug, Elavil, is mentioned to me. This is my personal experience with this drug. Yours may be very different. This antidepressant that has been on the market for many years. I am sending you a link to a Consumer Reports page that discusses various side effects. If you find any of these scary, ask your Doctor about them and why he thinks you need to be on an antidepressant.
Patrice


January 30, 2007
Amitriptiline is prescribed ³off label² for several conditions. I¹ve been taking 10 mg. every night for the past several years. I¹ve always had sleep problems and the Amitrip. was prescribed for me to keep me asleep once I fall asleep. For me it works for that purpose. I haven¹t noticed that it has affected my Rosacea one way or the other.

Karen
http://www.consumerreports.org/mg/drug-reports/amitriptyline.htm


January 31, 2007
Thanks Patrice,

I don't think I'm going to take this drug. This derm said there are a # of drugs that may or may not reduce flushing and it's just trial and error. Yesterday was my 1st visit with him. I'm not sure if I will see him again. He is at NYU hospital; in the same practice as my primary derm. Today I have an appt with a laser specialist for a consult. I feel overwhelmed with all the uncertainty and potential side effects of all the choices. I definitely don't want to make my condition worse but I guess that is always a risk.

Thanks for the information. I appreciate you taking the time.

Best wishes,
Melissa



January 31, 2007
Hi Melissa-

I started taking Amitriptyline for my daily headache. I was recently moved to Noritriptyline, just a bit different, b/c I tolerate it better. I  take 75 mg at night. I have been warned of weight gain, b/c it 
changes your metabolism. I don't know that its done anything for my rosacea. At least, it certainly hasn't hurt my face; maybe it has helped, but I'm also taking Tetracycline and using Metrogel, and I know that has helped me in the past.

Good luck.
Nancy in Ohio


January 31, 2007
Hi Melissa,

You don't mention the dose, but my guess is that it is 10mg. This drug is supposed to help with burning at these low doses. Myself, I have never noticed it help at all but we are all different. For me it was prescribed for fibromyalgia symptoms. I'm not sure the side effects are so much a risk at the dosages given to patients for off label use. I hear the anti depressive dosage is ALOT higher and my guess is that is where you'd come into these negative side effects. That said, of course anything is possible. If you are concerned, talk to your doctor or a pharmacist. Again, I think the dosage matters.

Take care,
Elena


January 31, 2007
Hi Elena,

The derm prescribed it as follows:
1st week 10 mg every night
2nd week 20 mg every night
3rd week 30 mg every night
up to 6 weeks and 60 mg and then he was to see me back.

I am not going to take it right now. I have too many derms. I just got back from a visit with a 3rd derm also recommended by my primary derm. This one is the "laser specialist" as per my primary derm. Anyway she did not do a 1064 nm yag as I had been hoping (for flushing) but did a 532 pulse dye laser. I look a fright right now- red raised welts all over my face. She also did my ears. It hurt like heck! Luckily I didn't have to worry about pre-flushing (which she doesn't do) because I was flushed from the minute I sat down in the office. Thank goodness my husband was with me. He has been very supportive through all this. If not for him (and you guys) this would be even worse than it is.

Sorry for the long post. The laser derm is seeing me in another 10 weeks for a 2nd procedure and then in another 10 weeks for the 3rd (maybe last for a while) procedure. She wants me to use elidel cream at night. Anyone know anything about this? OK. I'm exhausted. I'm going to veg in front of the TV now but will check back later. Anyone sharing their experience with pulse dye would be much appreciated.

Best wishes,
Melissa



February 1, 2007
melissa,
i've had several PDL tx's. the welts on me are usually where they have zapped the individual veins or discolored marks like old blister red scarred areas. that goes away in about a week, flaking off. 
Cool compresses help. i use a pillow case to encase the cold pack so it's easier on my skin, plus i use aloe vera. i love the outcome and my skin is hardier afterwards.
emily



February 1, 2007
Thanks Nancy for responding. I am holding off on starting any new drugs right now.
I just had my first pulse dye laser and am going to just give it all a break for a bit.

Best wishes,
Melissa


February 1, 2007
MELISSA;
A newer med used to treat tingling and burning is Cymbalta, an anti-depressant. You may want to google this, and of course, speak to your MD, too. Be careful out there.
Lynne 


February 1, 2007
Hi Melissa,

Yeah, alot of doctors do that increasing to 50 or 60 mg. with Amitriptyline. I believe at 60 mg. it still is not at antidepressant levels so again, the worse that would probably happen is the dry mouth. My doctor pushed me up to the 50mg. and I did not want to be at that (I did get the dry mouth at that dose), because from everything I researched it is the low 10 mg. dose that is supposed to help with the burning and the whole keeping you asleep once you fall asleep thing and the muscle pains. I have since weaned myself down to the 10 mg. and not everyday. I do it every other day and then I'll see if I can get off them altogether and eventually go with St. John's Wort or something in the natural family. Sorry I have no experience with pulse dye or any type of lasers.............I am THE biggest 'fraidy cat on the planet so all I do is the all red LED light, some doxycycline and 1% metrol gel. I just added La Roche Possay sunscreen today. They now carry it at CVS,
so I decided to try it. Feels very nice and so far it doesn't hurt. Hope you feel and look better soon.

Take care,
Elena



August 16, 2005

I began taking clonidine and noticed it seemed to help with flushing but it had some horrible side effects like making me very sleepy and leaving my mouth very dry. I also noticed I was losing a lot of hair when I would wash or brush it. The problem is now that I'm off the clonidine the flushing has resumed. Is there anything that works for the flushing like clonidine does but without all the horrible side effects? Also, are these side effects normal or am I one of the lucky ones? 
sprtmrg 

August 16, 2005
Hi,

I've been on moxonidine for 1,5 years now and although
it does tends to make you a bit dizzy and tired
sometimes, I find the pro's much more important than
the con's, so to speak. I tried clonidine a few weeks
ago, to see if it might work even better, but I hated
it, to be honest. Clonidine seemed to work less quickly
and well with me and gave me horrible rebound
flushings very quickly. It also made my mouth dry
indeed.

(**Note from Scarlet Red: I later found out that when I take clonidine every 8 hours, the rebound flushing is completely eliminated and I also found out that the moxonidine in fact made my flushing much worse these years. It can act vasodilatating and the clonidine, once I gave it a proper week's try, worked much better for me. I didn't know that back then yet however).

Mox helps very well with the flushings in general. 
The feeling of dizziness and tiredness usually becomes
less when you get more used to it, but don't forget
this drug and clonidine work by lowering your
blood pressure. that's why you flush less, but it is
just normal to feel a bit light in you head from it.
make sure someone tests your blood pressure though
after a while, to see if it hasn't dropped too much. I
know that moxonidine (Normatens here in Holland) is
available in Europe, not sure about the US. It tends
to have less side-effects as clonidine, because it
works on different area's in the brain. Even when your
blood pressure is normal, like mine, it has been proven
a safe drug to take, as long as your blood pressure
doesn't drop too low. For me it has been a life safer,
so to speak, and one of the very few meds I can take
without worsening my rosacea (antibiotics for instance
DO in my case, unfortunately).

hope you can get it where you life! I would advice
taking 3 times a day 0,2 mg. The drug tends to loose
it's power after 5 hours or so for me, and with this
doses I can maintain it's effect best. And important:
there is no rebound flushing after taking it, so it
seems safe to me to try.

good luck!  N.



August 20, 2005
(Regarding advice about Dr. Patterson)

Hi Marie

I went to Dr. Patterson in the UK January this year
and he used the Quantum machine. I've heard good
reports and bad reports about it. My experience wasn't
too good. I was treated with the 560 filter double
pulse from the Quantum machine. According to dr. P.
this was a very moderate and mild setting. It didn't
went very well unfortunately and the treatment made
not only the flushing, skin sensitivity and overall
redness much worse, but also the burning, even when
I'm pale. (But it was only one treatment though). Dr.
P. didn't dare to continue, wasn't sure if another
treatment would aggravate things more or not, so I
wasn't too convinced anymore myself at that point and
decided to give my skin a break and hope for things to
get back to how it was. Now it's 8 months later and
I'm still much, much worse then ever before this IPL.
I still regret going there every day.
Now I've heard from another Dr. Soldo (uses Lumenis
One) that this actually CAN BE a pretty strong setting
for certain people, with specific skin types and that
it might blast too much heath in their upper skin. He
proposes starting with the deeper feeding vessels and
only end with this 560 filter when the skin is much
more improved and stronger. I'm planning to have
treatments by him (in the US) later this year. 
Well, there are different approaches and many have had
good results with the Quantum, but I do wanted to let
you know about my case since you asked for other bad
experiences. 


best wishes, N




September 5, 2005
(In response to a question about flaky skin around the mouth)

Hi,

I've got the same as you and several derms told me
it's seb derm in my case. I've got dry skin with
flakes, that come off as an yellow greasy substance
when I wash my face. When I don't flush I don't have
the persistent redness that can come with sebderm
though. It localized typically between the eyebrows
and besides the nose and mouth, and also some on the
inner cheek area. I will add some pictures, although I know this might be very misleading. THIS IS JUST MY CASE, remember, but it might help you in some way.

Seb derm and rosacea go together very often. The derm
says it's best to treat the seb derm with ketoconazol
creme, and in my case I let the pharmacist place
ketoconazol 2% in eucerinum cum aqua, so I avoid the
harsh ingredients from the standart ketoconazol, but
still my cheeks are too sensitive to use it. Maybe
yours are not, and first ask your doc if you might
have seb derm of course.

Hope this helps,


n


September 13, 2005


Hello

If there are any doctors on here, can you please respond? I have been using Desonide cream (steroid) on my face for years, a doctor prescribed it to me. I keep reading hearing about how it's bad to use long term, etc. I kept going back to it because when I stopped using it to try something else, my face would get worse. Now I've decided to stop using it once and for all, and am on Minocycline and Metrolotion. Within a few days, my face is the worst it has ever been. Flaming red,
pustules, whiteheads everywhere. Is this common for stopping the use of a steroid cream, or for using one for so long? I want to stop using it, but if it's going to look this bad, or nothing else works, I guess I'm going to have to go back to it. I'm not leaving the house with my

face looking this horrible. Please help!!!
Theone


September 5, 2005
Hai,

sorry to hear you are having such a hard time. Is it maybe an idea to cut down on the steroid creme gradually and start using something maybe stronger then minocycline for the first time? Ask your doctor about it. I have heard often that it is unwise to just stop using steroids after a long time.


N



October 16, 2005
Hi everybody,

I keep reading about accutane and I wonder (like many) if low dose accutane also works for flushing and redness of the skin from the
vascular problem of rosacea? I DON'T have p&p's, very, very dry and sensitive thin skin. I wonder if there are people who are using low
dose accutane and see reduction in their skin sensitivity and flushing/background redness. Or is IPL the best solution for vascular
forms of rosacea, like mine? Would really LOVE to hear something about this!


best wishes, N


December 28, 2005

Antidepressant that helps me with flushing: Remeron


Hi all,
after a long time of debilitating flushing, I finally seem to have
found something that so far helps me with it. Not that I don't flush
anymore, but not as deep or 24/7 anymore. It is called Remeron
(mirtazipine). I started with 15 mg a day and upped it to 30 mg
lately. It also helps very well for my depression and anxiety luckily.
Besides lively dreams and a little bit more difficulty getting up in
the morning I don't have any side effects. I do need to stress that
some people seem to gain some wait on it, but so far I haven't at all
and I don't have the need to eat all day either. (do have a very
'healthy appetite and do eat a lot anyway..).

I also take moxonidine and 40 mg. propranolol daily, and altogether it
helps. The remeron by itself helped me immensely from the first
weeks on though. It also has anti-histaminic actions and seems to be
helpful by menopausal flushings. It doesn't increase the blood
pressure (lowers it more likely) and side-effects can be (not in my
case) drowsiness, tiredness and weight gain. 

I do plan to have IPL treatments soon again, but this drug helps me
getting through the day!

N.


January 5, 2006


I have a recipe for a great vegetable soup!! It might sound like a very stupid subject, but after 6 years of very debilitating rosacea (severe flusher/ neuropathic burning and inflammation from it) and troubles with so many foods, I do like to share this with all you guys. Just for a bit of fun, but it is genuinely nice AND very cheap AND very healthy and VERY EASY to make. 

All you do is the following: boil 2 normal potatoes and one sweet
potatoes, cut in 4 pieces each, in a pan half full with water. If
potatoes make you flare, take small ones. Sweet potatoes (with white instead of yellow flesh) make me far less flushy then normal ones, but they are more expensive.. Add pieces of carrot with it after approximately 7 minutes and add fine cut pieces of broccoli after another 5 minutes. Cook everything for 20 minutes or something in total, and cook some brown rice in between, separately. Bake it crispy in a separate pan after it's been fully cooked. Just add a little bit of olive oil or coconut oil in a baking pan and bake it golden brown on a medium/high fire. 

When your big soup is cooked, take a kitchen machine and blend
everything till you have a smooth soup. Add the baked rice, stir, some
salt. You can also add green beans or other type of beans/ veg. I have
irritable bowel problems, so tend to be careful with beans etc. If you
can have herbs, use some rosemary for instance.

In the water you can also cook pieces of chicken, for a chicken
variation, or turkey. You do need a piece of meat with the BONE, for
the taste. You can get the bones out later and then add the potatoes
and start where I just started.
Very tasteful, very cheap and delicious. It's a smooth, healthy, thick
soup. I love it especially chilled from the fridge. Some roasted meat
or bread (if you can take that, I can't unfortunately) with it and
it's great. 

I feel like a mama now, serious: I'm only 26 :)

N.




January 18, 2006
Great meds for persistant flushers

Hi all, 

I have posted about this several times already, but do want to
emphasize once more how much improvement I see (relatively) after
using the following meds for about 2 months: Remeron (mirtazipine,
AD), propranolol and moxonidine.

I'm 26 years old and have very severe vascular rosacea. In total for 7
years now, but only the last years it has been very bad. Last year I
was treated wrongly with the Quantum IPL and after that I didn't stop
flushing and burning for almost 9 months!!! Driving me so suicidal in thoughta,
that I couldn't pass a building in the street without counting the
floors (more then 8 was 'safe', suicidal wise). I was so depressed
because I saw so many specialists, took almost all the available
medication, but there seemed nothing to stop my neural burning,
redness, inflammation and flushing. All the docs told me I was the
worst flusher they'd ever seen. Ever. Enough to drive you nuts. And I
couldn't physically do anything anymore without cold air,
ventilator's, cool packs etc. Just unbelievable. It was total
survival; instead of living. 

Since being on these medication my flushing and redness has
decreased. I take an antidepressant called remeron (mirtazipine) for
the last 2 months and it has helped IMMENSELY with not only the
anxiety and depression, but also the flushing. This drug has
antihistamine actions as well, which is helpful for all rosaceans. I
didn't want AD medication for a long time, but am so happy I did start
this one. I already was on moxonidine (variation of clonidine) and
added propranolol, a beta-blocker: they work on different channels: a
and b channels, and block adrenaline to a certain degree, for
instance. They also keep your blood pressure a bit lower, which helps
keeping you less flushed in your face. 

I still have severe vascular rosacea, for which I now see Dr. Crouch. 
He has made some test patches, which gave me pale
spots en next week we will expand the test patch area. But overall I
can sit behind my computer again, do shopping, have sort of a life. I
still flush and am red/pink, need to watch what I eat and when, but
this has definitely helped me flushing so far.


Best wishes, N.



January 20, 2006
For everyone who wants to try this medication as well:

-I've been using moxonidine for more then two years now, 0,2 mg three times a day, every 8 hours. It has worked far better for me with less side-effects then clonidine. (NOTE; I later switched to clonidine and found out that it actually helps me much more than moxonidine). 
-I use 20 mg propranolol, two times a day and sometimes three times a day, for special occasions. Side -effects are like the mox: primarily feeling a little bit drowsy/ sedated.
-I started with 15 mg. mirtazipine, taking before going to bed. It tends to make you sleepy and drowsy, so it is best to take it at night. After a month I increased the dose to 30 mg. a day. Side-effects of this drug are increased appetite, weight gain, vivid dreams for me. I gained a few pounds so far, but not much and it is all about your own discipline (mine is not much, lol). 

The combination of moxonidine and propranolol can make you tired and drowsy at start. But I have got used to it pretty quick. And life is so much better without those horrible, hot, burning flushes 24/7.. Rather feeling a little bit sedated. But, I can still study for approximately 8 or 9 hours a day, writing my university thesis, so you can function very well on these meds.
I'm glad I heard from some people thanking me for this suggestion and hope it will help others as well. PLEASE keep everyone updated, on good and bad experiences! I will as well. Next week I will stay in the UK for a week to have new test patches done with the Lumenis One IPL machine. So far my earlier test patches are still pale, so that is a good sign. 


N



February 6, 2006


Hi, i need some advice. i'm 18 and ive had roscaea for about a year now, i just have severe flushing, if im not in front of a fan or 
sucking on ice cubes my face is burning!! i just got into a derm in November, and she doesn't know much about rosacea.. she says there's nothing she can do for the flushing, the only thing would be to have IPL and that only might help. i mentioned to her about beta blockers like moxonidine, clonidine ect. but she doesn't really know anything about them, and wouldnt prescribe them for me. im going to ask my regular doctor for one of them (he doesn't know anything about rosacea 
either, he even gave me steroids to use)i just don't know which one to 
ask for??.... im really small 5'2 95 pounds so i probable wont need 
anything really strong??... but i don't know??... also i've heard a lot 
of bad things about IPL ... can anyone give me some advice on this?? i'm 
feeling really hopeless and depressed, i cant go anywhere without 
turning into a tomato face!!....and i just want my life back!!

any help would be GREATLY APPRECIATED!! thanks
rielynn_88 



February 8, 2006
Hi, 

You sound like me: I've posted about this before by the way. I still use a fan a lot, but after a bad IPL treatment is was particularly bad for almost a year. Constant burning, extreme flushing etc. No way to stop it, I thought. I just walked around with cool packs, ice cubes, portable fans etc 24/7 and it drove me insane. After slipping into a severe depression I started with a drug called Remeron (antidepressive) lately, and it really helps me with the flushing and depression so far. It has antihistamine actions, which help control the flushing and it does something to the flushes, not sure what, but it relieved me somewhat. I take 30 mg before sleeping (started with 15 mg the first month).

I already was on moxonidine, 0,2 mg, three times a day and a great dermatologist I saw in London added propranolol to it, 0,20 mg, three times a day. 
These three drugs keep me going now and have made a big difference in my flushing. Also: watch your foods and try to avoid foods high in histamine (red meats, chocolate, tomatoes, egg plant etc.) and spices I would say. Also try to avoid alcohol and sugars. 

I'm having new IPL treatments lately, but only on a small test spot on the side of my face so far. We continue with this until both the practitioner and myself are sure and convinced it works for me and only then we continue to treat the cheeks...Luckily my parents pay for most of the treatments and I have a great (rosacea) friend who let's me stay and drives me.. I know, I'm lucky. But only in some ways, believe me.

If you have any questions, feel free to mail me any time. If I were you I would ask the dermatologist for these three meds. I know it might sound like A LOT, but they all have different actions: mox works on the A-receptors in your brain, propranolol on the B-receptors and Remeron (= a brand name. Active compound is mirtazipine) works on histamine levels and others (not exactly sure how it works but it WORKS for me).

best of luck, keep us updated please?
N


February 7, 2006
i do not know anything about beta blockers. i think tho, that they may be some sort of 
heart medicine in their initial usage. have you tried rynacrom/nasocrom? it is a mast cell normaliser spray. umm... i have heard different reports about IPL... i am going to have a consultation about 
it soon actually. so... it is all a bit of a mystery but after the consultation i will know more. 
well actually i have learned the most so far from posts by other people on this board over 
time.

do you eat a lot of sugary or spicy food? that may be a cause? but maybe it is just more of 
a vascular flushing thing. spicy food could be a big aggravator tho. it would be good if you could find a derm who does know something or a lot about rosacea. all the same, try a search on things you are interested in through the powerful rosacea-support search engine... just click on the Home link on the top left of the page, and then have a look lower down the Home page for the Search box. It works amazingly well (much better than using the search function from the actual message pages).

cheers

jasper





February 14, 2006
Speaking of depression, I seem to recall someone here mentioning that Remeron helped with their flushing.
I wonder if that person would care to comment on any weight loss/gain since being on Remeron. Are there any other antidepressants that help with flushing? Are there any that seem to make it worse? Many of my nursing drug books don't
address this.


Carla C


February 16, 2006
Hi, 

Yes, I mentioned Remeron (mirtazapine) for my severe flushing. I've been on it for 3 months now, but lingered for years first. I tried some antidepressants, including amitriptylin and citalopram (cipramil). All gave me actually extra hot flushes and sweating. Remeron is, as far as I know and according to a top dermatologist from London who I visited a few months ago and knows a lot about rosacea, the only AD that can help with rosacea flushings. It also doesn't€™t give the typical side-effects of SSRI's (Prozac, Effexor, Seroxat, Zoloft etc), including sweating and increase of blood pressure 
The reason that Remeron works has probably something to do with the very strong antihistamine actions it has. It antagonizes the H1 histamine receptor i.e. it's one hell of a central nervous system antihistamine, sort of like super Benadryl. Also it helps great for sleeping at night.

Remeron (mirtazapine) has really helped me with my depression, anxiety and flushing. It works very quickly and is designed for severe depressions, stimulating both serotonine and noradrenaline in the brain. My depression lifted after a week. Now I feel so much more normal again, I can hardly remember how anxious and desperate I was before. I still have counselling though, but I was so desperate for a long time and only now realize I should have started this drug waaaay back. 

To answer your question: yes, I did gain weight. I made a personal site with pictures, check it out if you like, and the latest pics are me with 10 kilo'€™s extra, the older ones are me skinny and €'normal'™. Yes, 10 kilo'€™s, that 22 Lbs. I used to be 114 Lbs and am now 132. It does worry me a little bit, but I know from other women who also gained about this amount and went back to normal after they stopped the drug, so I try not to worry about it and eat healthy and walk a bit every day to burn something off as well. The antihistamine makes you hungry unfortunately. But the pro'€™s are so much more important to me then this con. And there is no sexual side-effect luckily! (Like almost all SSRI'€™s have).

For a funny and very informative site about antidepressants, see: http://www.crazymeds.org/remeron.html


N


February 16, 2006

Well, I was going to try Remeron for flushing, but after reading that it caused N. to gain weight, I'm going to scratch that. I gained 30 pounds while I was taking Paxil several years ago, and I have just recently lost the last bit of that weight. So, I'm curious, has anyone tried any other drug for flushing that actually worked, but didn't caused them to gain weight???
Sharon Krabe


February 17, 2006
Don't let the weight gain change your mind please! I think the drug is magical in what it does to the flushing, depression and anxiety. Yes, you do get more hungry, but I didn't watch how much I ate the first months and am doing that now, and have start to take extra exercise and I'm stable now and hope to loose the extra kilo's again soon. If your symptoms are debilitating enough the weight gain is really peanuts!
At least, that's what I think.


N


February 16, 2006
You are a Godsend with this post -- thank you so much. As I've mentioned on the board before I will be undergoing heavy duty interferon based drug therapy this year and two of the things I know it will do is make my rosacea worse and make my anxiety problems worse so I have decided that this time I will go on an anti-depressant first. I've been tossing up which one and was thinking of this exact one because it's supposed to help with sleeping and relaxation and interferon caused sleep problems and extreme tension before but to hear from you that it's the only one that also helps rosacea just clinches the deal -- I'm definitely going to try this one first up and hope like mad that it suits me as it seems to be the all round most suitable one for all my purposes. even the fact that it increases appetite and therefore weight gain is good for me as interferon causes appetite loss and i can't afford to lose more than a few pounds -- I dropped so much weight so quickly on it before that it alarmed everyone I knew. so, thanks again for sharing all this info and your experiences with us. I for one
got a lot from it. 


Cheers, B



February 17, 2006
Hi Bibi,

I hope it works as well for you as for me! To me Remeron is really the best thing I ever used for my rosacea, next to moxonidine. It works as a very strong antihistamine like I mentioned, and I believe that does half of the trick. I feel so different with this drug; can't hardly remember I was on the verge of breaking only 3 months ago, with daily anxiety attacks, severe depression and suicidal thoughts. All lifted in less then a week. My dad has dealt with depression all his life, just as my grandmother and I believe part of my symptoms are genetic. But it was almost shocking to experience that some chemical changes in the brain can have such a profound effect, also on the amount and severity of flushing. The first month you might feel a bit drowsy or tired, but that will wear off. Just build your doses up slowly, from 15 to 30 mg and take it before sleeping. Indeed it will make you sleep like a baby, but dream a bit more vivid as well. I have only had nice dreams luckily, so I actually like sleeping some extra.

Please let us know if it works well for you ok? Everyone is different and everyone reacts different to chemicals of course.

Best wishes and so glad I could advice you,

N


February 17, 2006
I just went to the link you posted about this drug..........ARE YOU KIDDING ME??!!! I want the burn to stop, I really do, but like the link said, it's just for the severely depressed! Sounded so good too..........now I AM depressed! I found it interesting that amitryptaline was associated with burning sensations. Gee nothing makes sense anymore! For the past few years I have been taking low dose of this to help with fibromyalgia (and I hate doing it), and when my really intense full body burning started one thing I found out in trying to be a detective to find out why I felt like I was on fire was that Elavil (amitryptaline) was given in 10mg. dosage to help in a really weird condition that I can't quite remember the name of.........Cutaneous something or other..........anyway, it was intense burning feelings in the body and for some reason the Elavil was said to help that. NOt that I believe that since I WAS on it at the time my really intense burning symptoms started. Ah, well.............what a mess it all seems.
Elena Mutter


February 17, 2006
Do you mean that you don't like the side-effects that are mentioned? Check the other antidepressants Elena: EVERY medication has a list of side-effects, even plain aspirin. Most people only experience some, or none at all. I waited for a few YEARS because of the fear of side-effects, but would have started much earlier if I knew what I know now. 
Everyone has to make his or her own mind up about using an AD, but don't let a list of possible side-effects make you back off, please. You are most unlikely to get them all or even partly. The only thing most people do experience with this drug is increased appetite and better sleep. But other AD's might give sexual dysfunction, for instance, and this one definitely doesn't interfere with that.

This drug is prescribed by a top London dermatologist for rosacea related flushing and ALSO to people who don't suffer from serious depression. I'm not sure what you mean with "Sounded so good too..........now I AM depressed!"Are you referring to the side-effects? This page I related to is written by a eccentric psychiatrist who likes to dramatise. Read his other reviews. There definitely is truth in his descriptions and that's why I added the link, but do keep in mind (again) that all drugs have potential side-effects, many won't ever experience. 

I've taken amitriptyline for my neuropathic burning and flushing, but it made mine worse as well. I checked it with the pharmacist later and amitriptyline seems to open up the little blood vessels in the face/ hands etc. for some. Thereby causing me more flushing. But again, that was the case for me, and might not happen to others. Unfortunately one has to try a drug themselves before knowing if it works or not. But Im glad I gave remeron a chance.

take care,

N


February 17, 2006
Can Remeron be prescribed by a GP or does a Dermatologist have to prescribe it?
An Ly


February 17, 2006
Your GP. Both can actually, but usually your GP can prescribe it. It depends probably if you take it primarily and only for your flushings/skin or also for depression/ anxiety. 

N



February 17, 2006

Hi N.,

It is so nice that you made that site. You are such a beautiful woman! I know you mentioned weight gain with the Remeron, but I don't notice it in your pictures. I'd love to try the Remeron because I also burn and I totally identify with the whole not being able to convince others of the serious pain involved when they just look at you and see a relatively decent looking healthy person. It is maddening! Again, I'd love to try this as you seem to have really benefited from it but I am afraid of the whole "sugar craving" thing. I already am a carb/sugar addict and it has been all I can do to cut them out of my life to control the Rosacea with diet.........I don't know what I'd do if I were trying to eat sugar out of the bag LOL! That part scares me a bit. Is that really true, or was that link just being funny? How do you handle the hunger thing? Again, thanks for putting your pictures and story out there. I know how hard it is to look at our pre-rosacea days and see the pretty,
healthy people we were and then to have to look in the mirror today........I basically never turn on the bathroom lights when I go in and brush my teeth and blow dry my hair. I just hate seeing myself and it's not like I was as beautiful as you are, but I was "okay" LOL.........thanks again.

Take care,
Elena



February 17, 2006

Thanks for your compliments Elena.
I'm at the point that I don't really care anymore how I look, even when people ask me what's wrong and if I'm ok and why I am so red. Or lately that I added some pounds. I'm just grateful when I can go outside my 'safe house', where everything is rosacea friendly and controlled and stay unflushed for a while, so I can enjoy being in other peoples presence. Life can be so restricted for us unfortunately. I just function now with portable fan's, open windows and the heating off.

Anyway, to answer your questions: the sugar bag example was a bit overreacted I think. I have a very restricted diet myself, without sugar (very occasional some cane sugar, in very little amounts), medium amounts of carbs. (loooove brown rice, potatoes and sweet potatoes though..) and lots of veggies, fish and poultry. But I just notice that I could eat all day before without gaining virtually any weight and now I do add some pounds. And I keep feeling hungry for longer periods of time, despite eating. But when I take extra glasses of water that feeling is not too dominant. I was very slim to start with, so it actually suits me, according to my parents and most friends, that I am a bit more curvy now. I am just very happy that I flush a bit less, because I used to flush at least half of the day and night before and it made me really desperate. And I just feel so much less anxious or down. I gladly take to extra pounds and hunger. I still eat a LOT; at least 4 big plates of food a
day, plus (skin friendly) snacks and seem to have stabilized at 60 kilo's now.

You have to make out for yourself how well you can cope the flushing right now. I would definitely give Remeron a chance though. You can always stop if it doesn't suit you and according to my neighbor, who was on Remeron for about 6 months, the pounds are almost gone now she has stopped it for a few weeks.

best wishes, N


February 18, 2006
Oh I totally hear you about not caring what you look like as long as you feel good .....I mean, we can always avoid the mirrors which I do...LOL. I am a bit worried about the weight because I am already dealing with it. With fibromyalgia you get weight gain from a few different sources........one; my decreased exercising because of the pain (and I don't care what the doctors say about you gotta move or it gets worse.......believe me, in a flare up of this stuff you wouldn't move if someone put a gun to your head!), two; it does do something to your system. Probably that flight or fight stress thing that packs on pounds. Anyway, I am a tiny woman..........four foot ten inches with a small frame and had weighed only 98 pounds my whole life until all this started. Currently I am at one hundred and fifty-five..........no fun! I started to lose with restricted the carbs for the Rosacea. Funny, I could never restrict the carbs when it was just for vanity, but throw in the firy-pain and as you said, you will do anything. Anyway, easy weight loss doing that and I lost 10 lbs. and went from a size 14/16 to a size 10 or 12 at the moment. No model, but I'll take it. But really, the most important thing is that although I am still "uncomfortably warm" and feel sure that the intense burn is just the right stressful moment away, it is still better than feeling on fire and not being able to go out and put clothes on or function at all. Sad, what passes for "health" and "feeling good" for us, isn't it? One day when someone asked how I was feeling and I said; as perky as could be......"GREAT"! And I thought to myself.........how I was feeling was indeed great "for me". For me, at that moment, I could have turned somersaults.........but know what? If that person had been in my body and "felt" me; they'd have thought I was NUTS to say GREAT......But aren't we all just the most grateful bunch of people in the world for the tiniest bit of relief?

Take care,

Elena



February 17, 2006

For some of us, weight gain is NOT peanuts. I worked damn hard to lose the weight that I did, and I put it on easily enough without having something else help to pack it on. At my age, the last thing I need is to gain weight and become immobile. Besides, getting fat is depressing, so it would be a vicious cycle.
CC



February 17, 2006
Hi CC

I wrote: IF your symptoms are debilitating enough
the weight gain is really peanuts. I used to flush at least half of the day and night and it drove me desperate for something to break that cycle. I just want to share my experience and in no way 'promote' antidepresants in general or remeron in specific, or send the message out that increased appetite or weight is a piece of cake and something to take lightly. When you have tried many things and still are tortured by intens flushings, burning and pain there might be some people who take extra side-effects of a drug that gives relief for granted. And everyone makes that decision themselve, looking for the pro's and con's. So I'm sorry if you feel offended by anything I wrote, but that was definitely not my intention.
N


February 17, 2006
No offense taken. I just can't let myself gain all that weight back, because in my job, where I'm on my feet all day, it could be more debilitating than the rosacea.

Carla C


February 17, 2006
N, you are always such a help to us all and i appreciate your story and trying to help us out here. I couldn't imagine you trying to hurt anyone at anytime on purpose. We can only tell our story from our perspective and how it is for us. I think it's great that you are finding some relief. 
emily


February 18, 2006
I took Wellbutrin as well, and it did suppress my appetite, but didn't help me with flushing or anxiety. It also caused sexual side effects and at 24, that is something I was not willing to deal with. I've gained weight once before from taking medication, and I really don't want to go down that road again. However, I do appreciate N. sharing her experience with us. I'm sure there has to be something that will help my flushing and anxiety without causing me to gain weight, so I'll just have to keep on researching to find out exactly what that is!!!!
sharon krabe


February 18, 2006
It is very hard to find an AD that will not cause weight gain. Though I was on Wellbutrin and it did not cause weight gain but did cause flushing! I have been on Remeron for three weeks and had to start off at a very low dose because of side effects since I am very sensitive to medication. I started with 1/4 tablet (15mg tablet) I am now up to 1/2 tablet which would be about 8mg - my body is adjusting to this medication and the increase appetite is subsiding somewhat. You have to be very conscious of what you are eating no matter if you are on medication or not. I am very thankful to 
N. for posting her story and pictures of her rosacea. She has given me hope. It was through her recommendation that I tried Remeron and it is has been a godsend for me. My rosacea had taken a turn for the worst - I can't point exactly when it happened but it  was shortly after using salicylic acid facial wash also my hormones are erratic (perimenopause). 
Thank you again N. for posting.
stjoledo 





April 12, 2006

Hi all,

after a round of IPL (LUmenis One) my skin is getting progressively worse. It started in the second week and every day I get more deep red, flushed and burned. The doc. advised me to use some hydrocortisone, but
my skin is too sensitive for topicals. So he advised a short course of prednisolon, 30 mg. (prednison, oral steroid). 

My questions are:
Does anyone have good or bad experiences with this? Steroids give me a big, BIG alarmbell. 

Is there perhaps anything else I can do to calm this reaction down? I already take meds: moxonidine and propranolol for lowering of the blood pressure and mirtazapine for flushing.
I can hardly look straight from the burning, so any advice would be highly appreciated,


N. (Holland).


April 12, 2006
Hi N. please be very careful of the oral steroids. I tried this and it made my rosacea worse. It was so bad I was taken off work for 5 weeks! 
Jan Jones


April 12, 2006
Boy, this is a tough one. N, you are really having the bad luck. I am so sorry to see you are having this problem. Oral Prednisone may very well work - it can stop inflamation in it's tracks and give everything a chance to calm down. That being said, as Jan notes and like everything else some Rosacean's  will react badly to it. If you elect to take it I suggest you get an adrenal support  vitamin/mineral formula. Like Birth Control pills can stop your own bodies production of estrogen Prednisone can stop your adrenals output of your natural cortosteriods. So you will want to take something to support your adrenals as they "start up" again. Be aware that this stuff can make you crabby irritable and sleepless. Plus gain weight. Other than that it is fine :-0

Having used this (for my inner ears) - it is serious medicine, but it works when it seems nothing else will, so if it seems you are going to damage yourself with flushing this may be a rational choice.

Have you tried the natural anti-inflamatories - Boswellia, AlphaLipoic  acid, and the fish oils?

Please let us know what you decide and how it works out for you.


KHM



April 12, 2006

Hi Jan,

the doc is thinking about a low dosis of 20 mg prednisone for a 
few days. But I'm indeed very scared it will aggravate my rosacea to the point that I don't know if my skin just continues to be this bad or it is the steroid..How long did you take steroids and how much until you had problems?

Thanks Jan,
N


April 12, 2006
Dear N., 

I'm so sorry to hear this news. I remember the bad reaction you had to IPL once before and you must have gathered up all your courage to try it again only to find that for some strange reason it causes your face to get worse instead of better. As you know many of us see an increase in flushing following IPL temporarily before then seeing it settle down, but given the severity of the flushings and your experience last time it seems that this is beyond that normal extra sensitivity. 

I don't know about steroids except that Dr Nase used to always be very clear about avoiding them, but then I read more recent posts by him last year where he was saying they may be used perhaps at times for short periods so I don't know what to think. I know I would only go on them at an absolute last resort. 
What about those cooling gel masks that Dr Darm gives his patients to use after IPL? They are made from Aloe Vera. I know you said you can't use topicals but maybe this would help cool your face down when you flush. It certainly doesn't seem as risky to me as the steroids. Here's a link about them but if you do a google search you'll come up with more I'm sure:
http://marketplace.spaelegance.com/browse.cfm/4,1676.html

Can I just ask while I'm here how long it took before you saw an improvement in your flushing after starting the Remeron? I've been on it for two and half weeks and can't notice much difference yet in mood or in flushing, but the Dr thinks this is normal and that it will take longer for the effects to kick in. 

I do hope this proves to be a temporary reaction that calms right down soon. 


Best, B




April 20, 2006
Update after post IPL flares

Hi, 

3 weeks ago I had an IPL treatment. From day 6 I had extreme flushing, burning and redness. My dermatologist gave me a course of diclofenac (non-steroid anti-inflammatory drug) to calm things down and I'm happy to say that after one week of diclofenac my skin has calmed down considerably. I am even thinking about asking for a longer course, to see what benefit it will have long term. Maybe this drug is helpful for others, especially to calm down post IPL flares etc. It definitely hasn't had any bad effect on my (extremely sensitive) skin and extreme flushings. It also worked as a painkiller :)

N


April 20, 2006
Can you tell us the dosage that was prescribed to you? Thanks for the advice on this !
I will ask my doc for some but I need to know the dose.
Aimee


April 20, 2006
Hi Aimee,
just got an extra prescription myself from my GP.
I have diclofenac (diclofenacnatrium, by Sandoz) 50 mg, 3 times a day.
N


April 20, 2006
Sorry to burst your bubble, but you should not take blood thinners (aka: asprin, tylenol, especially prescription painkillers, etc.) after IPL because IPL coagulates the blood and thickens it to produce an effect that literally chokes off blood vessels. DO NOT TAKE ANYTHING WITH IPL.
chris





April 29, 2006

Wow, I just joined this group and already I feel like I have found people that are in the same boat as I am! I have a problem that I have had to deal with since grade school and it sometimes makes me just wanna give up on life because I don't know what to do. 

I am a 22yo red-haired male from a Celtic background, however, I don't have fair skin. My whole body tans, except my face, the cheeks in particular. I have had rosy cheeks my whole life, but it seems like they have taken over. I have no control over when they will flush or for how long and when they do, they just plain hurt. They get really hot and red, almost purple sometimes, and throb like you just hit your thumb with a hammer. They are also CONSTANTLY dry, and when they get dry they get even hotter and redder. I have to carry around lotion that has been watered down and constantly splash water on my face because my cheeks just suck up the moisture. It's even worse when I am in the sun. Of course I use sunscreen, I've tried a million kinds, but they only help a little bit. My cheeks flush constantly. In warm rooms, when the heat is on in the car, when I wake up in the morning, when I exercise, when I cook, when I'm nervous, embarrassed, or otherwise stressed. I don't know if I have rosacea or not, but from what I've read on the internet, I have all the symptoms minus the spider veins and blemishes. 

Does any body have any clue as to how I can get my face to stop heating up?? Does anybody else have this problem? I am going to a dermatologist soon, but I wanted to see what the group thought. I 
would really appreciate any help on this matter as it is destroying my life. 
Jordan


May 1, 2006
Hi Jordan,

I know very well what you are talking about. If you want, check my webpage and read my experiences so far. I was for a long time suffering from chronic red cheeks, a constant burning and hot face and it drove me very depressed and desperate. Now I see a top dermatologist in London, after seeing almost all of the dermatologist with any affinity with rosacea in Holland and finally something seems to help. I mention it on my page as well, but this London dermatologist put me on moxonidine (Normatens), an beta-blocker (propranolol) and the drug mirtazapine (remeron, an anti-depressant that really helps with flushing, hot flashes and a red burning face). The three together made such a difference! I would definitely discuss this with your dermatologist. Moxonidine works as an alpha-receptor, propranolol as an beta-receptor and mirtazapine and an anti-histamine, but far better and in a different way then usual antihistamines, like benadryl.

try to convince him, or just go to your GP, and see if it helps you. Laser is also an option, but you have to be very careful with it.There are also other medication, like antibiotics, that are often used for rosacea, but in my experience they usually help with papulas and less with the chronic redness and flushing. If you google a bit and read some posts here you might become more wise as well. On my page there is also some info about foods you might be careful with. If you have any questions, email me. I'll be pleased to help in any way, knowing how life-altering and dominating this condition can be.

Take care and best wishes,
N. (Holland)




May 10, 2006
still doing very good on new med.combo

Hi,

I'm just back from 5 days New York with my family. It was great and my
skin behaved so well! It was almost every day around 78 degrees Fahrenheit but my face often looked pale, or just minor flushed. Such a massive difference with last year, when everything made me flush and even a trip to the local shop was a big test for me. I honestly
thought things would never be ok again and the docs had given up on me.
Sorry, don't want to sound like I'm massively overreacting here, but
that's what a year of non-stop flushing, redness and burning, very
little sleep etc. did to me.

I wrote about it before but keep repeating it: Dr. Tony Chu, a
renowned hematologist from Hammersmith Hospital in London has put me
last december on the drugs propranolol (beta-blocker), mirtazapine
(antidepressant but helps strongly for flushing and acts as an
antihistamine drug), together with the moxonidine I already took.
Together with some diclofenac (anti-inflammatory, only sparingly to
use) on bad days this seems to do the tric. My rosacea isn't gone and
I still can flush heavily from the obvious triggers, but the nightmare
scenario I was living in had improved significant. Side-effect was
temporary dizziness (used to it now) and some increased appetite from
the mirtazapine, but nothing too bad. 

I also had IPL, first lots of test patches and lately one full face,
with the Lumenis One, also in the UK> Although I reacted strongly to
it first, with increased flushing and redness, now things seem to have
calmed down again and I even look a little bit better then before I
had it. 

So things are finally going ok for me, fingers crossed this will
continue..


N. (Holland)



May 15, 2006

Question: does hair colouring affect your rosacea?

Last week I lightened my hair in an 'adventurous' mood and although I tried my best to not get any of the bleaching stuff on my scalp, I do notice a definite worsening of my rosacea ever since Lots of p&p's all of the sudden for a week and more redness, burning and flushing. It actually seems to increase after time, weird enough. I'm just not sure if it is directly related to each other, but the last months it all went so well again, I can now tear my hairs out. Does anybody else (women presumably most, lol) have any experiences
with this?

Thanks , N


May 15, 2006
Certain harsh chemicals can be intolerable to me as well when I colour my hair, I know use garnier which is less harsh, and its better for me. It is true though for me too
rose jill


May 15, 2006
This is interesting and certainly notes how different people have different reactions...I can't use Garnier anything, and can't use jojoba oil either, both make my scalp break out. I never noticed a corresponding face problem, but still..

Nancy in Ohio





May 22, 2006

Hi ,

I wonder if there are still people using boswellia, and if it helps them with background redness, flushing and p&p's? And also important:do they have side-effects, like dry skin?

Thanks millions,
N. (Holland)


May 22, 2006
Hi N,

I'd definitely wait to take the boswellia until you talk to Dr Chu if you're seeing him soon then. Tell him it is a 5-lox inhibitor like Zileuton which is used to treat asthma. I think these 5-lox inhibitors really work to prevent some of the effects of the inflammatory process mainly by blocking the production of leukotrienes which are downstream products of 5-lox (5-lipoxygenase), which is itself a downstream product of arachidonic acid production. Here is some more info on leukotrienes:
http://rosacea-research.org/wiki/index.php/5-LOX_Inhibitors

Singulair also blocks one of these leukotrienes (making the total block less complete) and some
rosaceans have found it helpful too. 

NSAIDs on the other hand are COX inhibitors not 5-lox inhibitors. The COX-1 & COX-2 enzymes are also downstream products of arachidonic acid, but their downstream products are prostaglandins and thromboxanes not leukotrienes. Prostaglandins and thromboxanes are also players in the inflammatory process so inhibiting them also seems to help for some rosaceans:
http://rosacea-research.org/wiki/index.php/COX_Inhibitors

I think the main worry again for 5-lox inhibitors for us is if rosacea is caused by or made worse by infection with some pathogen (this is an if - it has not been proven), taking them may make the infection worse (as was the case with the one study in asthma that shows that taking a 5-lox inhibitor may lead to increase murine strongyloide infection). Again, talk this over with Dr Chu as I'm no expert by any means.

I'm currently on an antibiotic regimen and am doing well. I'll post more about this in the future if it
continues to be successful...

Be sure to let us know what Dr Chu says...

Take care,
Dan


May 23, 2006
Hi N, I started using boswellia last week and have only been taking it for about 5 days now. I have not noticed any definite effect on the reddnes and flushing but I have read different post on this site that suggests it may take a few weeks before results happen. One good thing is that it has not increased the redness which so many other things I have tried have done. Also I have not had any digestive problems when taking it even on an empty stomach and there has been no increase in dry skin which is something I would have noticed quickly because I have very sensitive skin and anything that causes increased dryness always leads to an increase in redness. If in the coming weeks I have success with boswellia I will post the results. Good luck
Albert Feldman


May 23, 2006
I use it two times a day, have been for at least a year, and do believe it helps curb inflammation
khm4aim



May 23, 2006
Hi Dan,

thanks for your quick reply. So if I understand it correctly, boswellia might work well for me for the first, let's say, 6 till 8 months and then give more allergy reactions, or make you more prone to allergies? And give more chance of parasites in the body?
I'm not sure if it is wise for me to start with it now: i just bought a bottle, but have an appointment with Dr. Tony Chu, a very good dermatologist, who wants me on an anti-malaria drug, to calm down the inflammation. I'm hesitating now with the boswellia: maybe it's better not to start with it now and discuss it with Tony..

I've been on an NSAID for 6 weeks and it did wonders for my rosacea the first month. Then it increased my blood pressure too much and made me more red and flushy and I also had to stop it because of the risk  of stomach  bleeding   etc. But I read that boswellia acts like a natural NSAID, so I'm very keen on trying it.

Difficult.

Do I understand the side-effects of boswellia right? I also read this: It effectively shrinks inflamed tissue, the underlying cause of pain, by improving the blood supply to the affected area and enhancing the repair of local blood vessels damaged by proliferating inflammation. This ability is attributed to chemical compounds in the gummy extract, scientifically known as boswelic acids.
That increased blood flow won\t be good for us I suppose..?

Thanks, N.

PS: do you take anything else instead of boswellia now, yourself?



May 23, 2006
Hi N.

I'm not currently using boswellia, but last year I did find that it seemed to help to minimize redness, flushing, burning, dryness and p&p's quite well for 6-8 months. After 9 months or so, I did notice an increase in p&p's and particularly other allergies although it seemed to still control the rest of the rosacea symptoms fairly well for me (flushing, burning, etc). Still, I became increasing concerned about the potential that 5-lox inhibitors might allow for increase in parasite burdens given this increase in allergy type symptoms, so I decided to stop taking it for the time being.

Here's some additional info on 5-lox inhibitors:
http://rosacea-research.org/wiki/index.php/5-LOX_Inhibitors

Boswellia may help your symptoms (it does not seem to help all rosacean's symptoms), but please be aware of the potential for and watch for signs of increased infections, etc if you do take it. As for dual COX and 5-LOX inhibitors (quercetin, green tea, neem, turmeric, milk thistle), I have not found any studies which suggest that they might allow for increased parasite burdens, but I do believe caution is warranted when using them since they do inhibit 5-LOX products too. Also, some rosaceans (myself included) seem to be very sensitive to salicylates and find that these dual inhibitors seem to cause a worsening of symptoms.

Here is some additional info on dual COX & 5-LOX inhibitors:
http://rosacea-research.org/wiki/index.php/Dual_COX_%26_5-LOX_Inhibitors

Even though these are non-prescription products, it may be best to discuss the pros and cons of their use with your doctor. While your doctor may not have a lot of knowledge about 5-lox and dual 5-lox and cox inhibitors in helping with rosacea symptoms, they should be at the very least able to help you watch for signs of increased infections, etc. 

Anyway, hope this helps. Keep us posted on your progress...

Dan


May 23, 2006

I took boswellia for several months, and it didnt help me at all. Thats just me though, so it may work for you.
sharon krabe






June 20, 2006

Hi everybody
,
after 7 years of rosacea and many trials with drugs, creams, lasers etc., my dermatologist here in Holland suggested a little while ago starting low dose (ro)accutane. He thinks it might help to decrease inflammation and the overall temperature of the skin, and help my rosacea. Although I have only now and then papula's and more problems with overall redness, burning and flushing (the so called 'vascular' subtype). Is there anyone who can share their experiences with low dose accutane please?
I wonder if it helps some with the flushing, redness and burning and what side-effects are te be expected. Also, I read that accutane can actually INCREASE redness and flushing in some, when doses are too high. I'm very curious at what dose this might happen. Thanks for all shared information,

best wishes, N. (26, Holland).



June 20, 2006
 Hello N. i would most definitely start on lose dose Accutane  for your Rosacea symptoms Your dosage should start at 10mg daily with food and hopefully after a few weeks your skin will feel and 
look a lot calmer.
gerrycrilley


June 20, 2006
I have just come off a course of Accutanne lasting 9 months at 10 mg daily and have had fantastic results had bad oily skin with  P&P along with constant redness and severe flushing.
After about one month in the oily skin and the P&p cleared up and the flushing started also 2 really subside greatly. Am now 2 months Accutane free and still no flushing or oily skin with P&P and my 
constant redness which took a couple of months to lessen is still doing good although still have some redness but lot better than before.
The only side effects at this low dosage was constant chapped lips and dry skin easily sorted.
For once it seems that u have a DERM that knowns how 2 treat Rosacea properly my Derm refuse my Accutane i had 2 get it off the Internet myself
Good luck


June 22, 2006
Hi gerry,

thanks for your reply! I wonder: is the dryness of the skin very bad on 10 mg daily? My skin is too sensitive for topicals/ moisturizers and it is already fairly dry. I notice that on particular dry days the redness and flushing increases as well. Apart from that, so GOOD to read you have had good results for your rosacea and for the flushing and redness as well. Do you think you might continue with the drug later, since it worked so well for you?

N



June 22, 2006
So anyone can purchase accutane off the internet? Could you email me the site? Thanks."
Tammy



June 22, 2006
Hi Tammy, 

Yes, one can, but it is a very bad idea because Accutane (and the cheaper, generic versions of isotretinoin) are very powerful drugs and even taken at low dosages, you really should be monitored by your own physician or dermatologist. For that reason, it would be wise NOT to touch this unless it is prescribed by your doctor. 

Kind regards, 

Aurelia 

PS Apologies to the group for being behind with the board. Have hardly posted anything for the past few weeks, but will try to catch up a bit over the next few days. So, if I reply to something already "done and dusted", please accept even more apologies. :) 



June 25, 2006
I agree, I have thought about it too, but the horror stories I have read scare me! hair loss, increased depression and MORE breakouts when you stop. im 41 and have all my hair and wanna
keep it! I have maybe 5 greys so far. The decrease in oily skin would be why I would wanna use it. but im not sure its worth it in the long run, as my depression can be very bad anyway.
Ricky Butler



June 29, 2006
I too have been through years of antibiotics and topical treatments with no improvements. My doctor now wants me to try accutane for my rosacea, which includes the acne portion. I have heard of the side effects but also too I read that they are possibly lessened with a lower dose. Does it matter if I take generic or brand name? I am looking for relief from my condition but the brand name is quite expensive. Then again I don't want to cheat myself out of results by trying to save money. Any advice would be greatly appreciated!
bckstgrl



July 5, 2006
I am in my 6th month of Amnesteen, a generic Accutane. We have been tweaking my dose since January, when I started on 20mg/day. I am now up to 40 mg/day, and think that maybe I need to throttle down a bit.  (I weigh 160 lbs.) I have tried all the antibiotics and topicals that my dermatologist prescribed for years - nothing has helped & some have made it worse.  My findings about the Amnesteen:

1. I still get paps, but they are _far_ fewer and disappear within a
day instead of a week.

2. Some skin dryness, especially the lips. When I notice the first
hint of a dry "episode", I put on aquaphor that night when I go to bed.

3. Dr. needs bloodwork every month to check my liver function & lipid
levels (which increase during the drug treatment)

4. It is easier for a pharmacist in the US to dispense cocaine than it
is Isotretinoin. (A direct quote from my pharmacist) All Rx must go
through the iPledge program (https://www.ipledgeprogram.com/). You
must show your iPledge ID card at the pharmacy & the drug must be sold
within 7 days of the Dr's Rx.

5. Females have more restrictions. I think my doctor has to have
sworn statements that they are on 2 methods of birth control, etc.

So to wrap, it has been good for me. I think that I will slowly get off of it, then wait 6-9 months and try IPL to tackle the redness...
Kevin Domingue




July 5, 2006
Hi N.,

It looks like you have gotten a couple of good replies to your question for first hand experience.

I just wanted to point you to an article I put together on low dose accutane. I hunted around for the best papers and information that I could find. So I believe this page holds the latest and greatest
published information about low dose accutane and rosacea.
http://rosacea.ii.net/news/2006/01/focus-on-low-dose-accutane.html

There is a 2004 paper there on continuous microdose accutane that looks to have the best long term, multiple patient information I have can find. The author sent me a copy of this paper as only a very brief summary is available for free on the net.

Hopefully it might help you convince a doctor to let you try it should you decide to go ahead.

all the best,
David Pascoe



July 6, 2006
Thanks David! Very nice of you to post this link.

Will let you know if I start accutane and of course how things are going then.

Best wishes,

N.









My skin during the early years, still flushing a lot and long term

I sometimes cut off parts of my face or half the pictures, because I find so many of my portraits on other websites, rosacea sites - always unasked - that I rather limit that chance by cutting them up a bit, and focusing on the redness on the cheeks mostly.
  BTW, in pictures the colour is a lot more flat and light than in reality; the redness is much worse in reality than on my worst pictures. 



 

  

  









My skin during 2006-2009, after starting anti flusing medication, on good days (when I still need cool air and fan on and environment control, or else I still blow up all red..)




 

 

 

 

 







My skin the past couple of years, still on anti flushing medication, trigger avoidance, fanning, diet, + sedentary lifestyle. I have big time flares still, and added pictures of those in most of my posts here. This is just a summary of good days, mediocre- and some bad days. 

   

 

 

 

 

  

  

 

  

  




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