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 only write down a section of them all and leave out the private message communications I had with some people about all my rosacea troubles. One of the kindest, most knowledgeable and memorable people I want to share my gratefulness to, is a forum member called Banshee, real name Kristen, who is about my age. At some point in time, she had a lot of IPL treatments I remember, or it was laser perhaps, no I think IPL and then after dozens and dozens going well, suddenly damage started to show in her face, including traumatizing fat loss. In 2021 I heard through Peter and Kristen's mum that Kristen has passed away from cancer. Just like we lost David back in 2016, at a young age. He was a personal friend of mine by then and I still miss his intelligence and kindness today. You can read some of his posts below as well. RIP beautiful souls.
Oct 28, 2003Hello to 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. Best wishes Nat
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 cream, 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 cream could do this..Is it necessary to start with the doxycycline in order to find some relief?? I would really appreciate every response. Best wishes Nat
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. and Is there anyone who will share his or her experience with burning/ flushing and doxycycline? 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 Doxycycline (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 doxycycline 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... Best wishes Nat.
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 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:
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)
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 :)
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.
Nov 9, 2003
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
Nov 9, 2003
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.
Nov 10, 2003
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
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.
Hi 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, headache.. 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, Best wishes Nat
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 bacteria on my skin are killed by 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.
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 bacteria on my skin are killed by 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.
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.
Dec 29, 2003
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 pharmacy. 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.
*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.
Jan 21, 2004
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. Then the flushing got worse again. But now my stomach is a mess since starting these pills: swollen, bad digestion. And my seb derm 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, 2004Hi 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 papules/ 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 do anymore. I'm not allowed to use antibiotics for long periods here in Holland. And they did not take away my flushing and redness (as the derm promised and predicted) whatsoever, Only roaccutane is an option now apparently, 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 cream 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 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)
March 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.
March 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, and I have some samples of her "sensitive skin" products to try. Marcia
March 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 get better. N.
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 the antifungal? Are there any people with this same experience 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 minimalist 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
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. 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. 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. 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. My philosophy is if one part of my face doesn't like it, don't use it anywhere. 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. 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. 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
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)
April 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.
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 than 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
April 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' 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.
April 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
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 seb derm 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.
June 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
June 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 emulsifier 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
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 its dryness. I can'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)
June 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.
June 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 blood vessels. 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 clonidine 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
June 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)
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)
June 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
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.
June 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
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.
July 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 lots 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, thinks I´m totally mad, with my green rabbit food etc., ha ha). N.
July 7, 2004
I wake up with a hot face and redness. I don't 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 buckwheat 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
July 7, 2004
Do a google search on the "chillow". I have one. It's quite cool! Good luck, Beth
July 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
Hi 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, been 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.
July 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 I 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)
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
July 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 [Thanks Lucenta.. Patterson ruined my skin when I went to him :(
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!
October 20, 2004Hi 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 being 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 with me, telling about the procedure matter of fact like, and stated that I'm far too occupied with the rosacea. (we had email contact before and I expressed my strong concerns with side-effects, risks, not being able to use calming creams etc). I follow as much postings on the forum 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'. But that things would either improve overall, or stay the same as they are now. 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 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 papula's. 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, 2005Hi all, I had my IPL (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 flush. 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. Although my sister thought I was pretty darn red in fact. The treatment was pretty painful I must say, but tolerable. Afterwards I cooled my face for hours with covered ice packs (bags 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, 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 of 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)
Dear Dr. Nase and others. I've just had my first IPL and now the swelling has gone down Right now I'm still swollen, and having intolerant skin that's even more sensitive and reactive. Hopefully this is 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 boswellia 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, 2005Hi all, 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, Since my first IPL treatment with Dr. Patterson in the UK, my skin seemed to be worse and more reactive than before the treatment. But the past days things seemed to calm down a little bit. What a relief! I flush less easily than during the terrible aftermath, 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 heat 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 heat) 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 flushing 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 intense flushing, redness and swelling. Oh, and concerning the papulas and IPL: I definitely have less papulas after my first IPL. Just a few little ones 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 received 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
Hi, 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.. 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 than 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, comforting me and telling me this was just normal. He didn't know why my skin acted so extreme. 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 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 thn 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, and he couldn't do much for me, didn't know if this was permanent or not.. Utterly depressing. 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, and she was a bit surprised. Two dermatologists that I have visited regularly 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 optimistic: luckily it was only one treatment, it MIGHT not be angiogenesis or permanent, there WILL be something to treat 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 even 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, 2005Hi all, 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 practitioner 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 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, Looking desperately for something to help me get rid of the horrible redness, burning. Things have been just been far too lately. 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
Hi all, Here in The Netherlands there is no real answer: 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! Rosacea is not contagious right?! Boyfriend starts having rosacea signs after 6 months with me.. Nasty but inevitable warmth-experiment coming! Something weird and concerning has happened. My boyfriend has been extremely considerate 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. 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 stomach, red rash besides that). Singulair gives me a very sensitive and swollen stomach as well, but I hope this will subside. Oh, and another thing that helps LOTS: my dad gave me a humidifier, but one with cold and humidified cold air (not too cold), that I point at my face during sleep and I haven't slept so great for ages. Wake up cooled and pretty pale! What a difference with just two weeks ago! Thanks, N.
Mar 13, 2005
Hi all, I have a raised 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 jawline etc., areas 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 wonderings 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.
Mar 16, 2005
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
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 recommend 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)
Mar 25, 2005
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 rope, 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
April 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.
April 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
Hi, 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.
April 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 syndrome 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.
April 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
April 9, 2005
Hi, I'm wondering if anybody is successfully 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.
April 9, 2005
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.
April 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
April 10, 2005
April 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
April 10, 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.
April 10, 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
April 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
April 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
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 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 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, 2005Hi 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
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, 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, 2005Hi 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
Hi all, I've 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, 2005Hi 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
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
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 angiogenic 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
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
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 s: 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)
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.
Hi all, Since a week I have intense 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 postpone 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.
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 vessel strengthening supplements like Alpha lipoic acid, grapeseed extract, pycnogynol, Esther (vitamin) C and flax seed 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
June 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
Hi Bridget, 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 flushing 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.
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 flushing 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
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 i, to be honest. Clonidine seemed to work less quickly and well with me and gave me horrible rebound flushing very quickly. It also made my mouth dry indeed.* (*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 vasodilating 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). Moxinidine helps very well with the flushing 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
Hi, 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
Hi all, I have posted about this several times already, but I 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 thoughts, 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.
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 flushing 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, 2005Hi 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.
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, 2005Hi all, I've read a lot about the red lamp and can borrow one to give it a try myself. My rosacea and flushing 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
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
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 i, to be honest. Clonidine seemed to work less quickly and well with me and gave me horrible rebound flushing very quickly. It also made my mouth dry indeed.* (*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 vasodilating 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). Moxinidine helps very well with the flushing 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.
(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
(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
Hi, 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.
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, 2006I 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.
Hi all, I have posted about this several times already, but I 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 thoughts, 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.
