22 August, 2012

Summary from the last years II

January 2009  

The job didn't work out. I worked there for a year and in the end my skin got worse and worse, people complained about cold wind coming in from my window, and I did as well as I could, but in the end it didn't seem the right job nor the right place. I also had troubles with my uni work, since I had little time for the big publication that is coming up. So I am pretty happy with the work experience and being able again to do things and jobs from my own home and at my own time or from uni. Sometimes a job can also make you realize what you don't want, and this was such a case. It was also the depressing work environment.. People with their bread box and pre packed food, doing auto pilot work, walking the same little walk in their lunch breaks, with the same people, talking about the same things... The same work and patterns day in and day out. Work that is leading to just more piles of the same type of work, rows of more people with the same questions demanding the same answers. I mean, I could get used to it and put up with it, but it didn't work out as a great employer-employee match so well, that's life.  I did make some friends and the daily structure was not all bad, but I was just totally knackered by 5 o'clock from the costumer service and admin work, and I had a few conflicts with team leaders about being upright and sincere to costumers on the phone (I believe in being honest and admitting when needed that the company made an error, but they told me to always back the company up, whether right or wrong, for instance. And they just listened in with you whenever they wanted secretly..). The writing job is more challenging, but I would have tried for another year to make it work probably if things had gone more smoothly there. My rosacea is doing ok now, it had really gotten way more red and flushed during work. I have had quite a red face during the last winter months, due to the cold outside I guess and the high temperatures and very dry air in the office. But the flushing is not as bad as it has been in the past and since being in my own working place with environmental control, things have calmed down again. The redness seems to be more superficial; visible, but my skin often feels pretty cool to the touch and I am very happy with that. I try not to care too much about the red appearance. 

I am still on my old medication. Mirtazapine, clonidine, propranolol for the flushing and diclofenac at night (when needed) for the anti-inflammatory actions. Xyzal for my allergies and it makes it possible for me to eat more foods, also those higher in histamine, especially when I make sure I take an extra tablet before meals. I feel that my current medication has been the most helpful of all. And because of this I am actually able to do more and have less limitations in the rest of my life. I don't have p&p's apart from a few every now and then that are hormone or food related. I don't have much problems with side-effects. I can get a bit more and easily tired now and I need to be careful of my weight all of the sudden because of the mirtazapine (it makes you pack the pounds quickly and gives a ravenous appetite), but the effects on my flushing have been great and I chose to life with these side-effects. But that is a personal decision of course.

30 May 2009 

A little update. Flushing and skin are still under rather good control. Despite the temperatures getting higher. I am mainly flush free for most of the day, but need to keep a very careful eye on my diet. Went on a short travel to Ireland and France, low budget but it was really nice. Traveling around, nice foods and drinks, music, just strolling around and over thinking everything. Not that much new insights came from that though haha. It's mainly loop thinking, but to realize that ex-colleagues B. and D. and M. were dealing with funding requests and unsatisfied teenage mums while I saw the shorelines of Ireland with live music in small bars on top of cliffs was not too terrible.

I have "sinned" for two weeks, eating chocolate every night (not too much, but still) and sweet desserts with dairy and vanilla. My flushing stayed surprisingly calm (which is new to me, and I keep the antihistamines partly responsible for this), but I broke out quite drastically after a week or so: lots of p&p's, almost like bad rashes of tiny acne, over my cheeks mainly. I have used metronidazol creme for some time (only on the red spots themselves, as my skin is too sensitive for it actually) and after a week or two, and after a very strict and healthy diet, my skin returned to normal. I have normally hardly any pimples or red spots, just the rosy or red cheeks and vascular components and the throbbing heat and burning in my face, but this proved to me that these foods do cause an inflammatory action for my body. Apart from that it is amazing how well I can stand some of the bad triggers of the past, like heat and (indirect) sunlight. I think this is due to my medication, still. In time my skin seems to 'normalize' (as far as this can actually happen with this condition) a bit more and the absence of      continuous flushing has desensitized my facial blood vessels, so they act a bit more like they should do at the moment. Still, a flush is easily achievable for me. And I still need my fan and trigger control. Spend many days inside when the sun is bright. I am not very happy with how difficult it has become to keep my weight stable and normal (which is low) however. It has been like this since I started with remeron (mirtazapine); it works wonders for my flushing and skin, but makes you gain weight and probably slows down the metabolism. So normally I used to be about 52 kg, for many many years, and I could eat whatever I wanted and needed to watch myself for not getting too skinny and now it is the other way around and I gained 10 kg and need to be very careful with every calorie I put into my mouth. The only real downside to it all, but well, vanity has been thrown out of the window a LONG time ago, so I guess I should learn to live with this (for the moment) as well. It definitely helps me to get the cycle of inflammation and flushing down, and that was not a healthy state to be in for my body either. 

14 June 2009 

A little update. I have decided, after talking about it with my psychiatrist, to try to stop with the mirtazapine. My skin is doing well, I can't stay on this med forever, due to side effects (mostly the weight gain, which has become frustrating to me, as I am naturally thin) and for other reasons. I have been on 30 mg for 3,5 years and it has done wonders for my skin. therefore I am pretty uncomfortable about discontinuing with it, but I hope that the clonidine and propranolol, which don't give me many side-effects at all, will help to maintain the good state that my rosacea is in at the moment. I am advised to taper the mirtazapine off within 6 weeks. I went from 30 mg to 22,5 lately and already feel very strong withdrawal symptoms. I have been warned about them, so they are no surprise, but very prominent still. Most of them are serious nausea, insomnia and irritability. My brain feels foggy and I am dizzy all the time. I will stay on the 22,5 mg for a week and then the week after slowly taper it down to 15 mg. I use Xyzal as well for my allergies, but found out that this med also has the potential to cause significant weight gain, so I will stop using this med on a regular basis as well. Perhaps I can use it sparingly for special occasions (dinners, going to places with loads of allergy triggers, like people with dogs and cats or a spring time walk with all the pollen problems and such....). They mainly seem to help me eating a broader variety of foods again, which was needed also for proper nutrition. All exciting!

October 2009 

I've stopped with mirtazapine about 6 weeks ago. I lost about 6 kilo's and two dress sizes effortlessly
the last weeks. I felt miserable the last 6 weeks though, even despite that I fitted my tight mini skirt again (that I used to wear in the 'slim past').... no energy or happiness to enjoy it one single bit. Because my face and the burning and flushing kept me occupied 24/7. One other great thing from mirtazapine is that it helps you sleep wonderful. I have been awake in the middle of the night for hours (also from flushing ) ever since I stopped with it recently and tonight was the first night again I just fell asleep easily and woke up 8 hours later without any disruption. The flushing was not bad when I had just stopped with it (tapered it off during the course of two weeks, went from 20 mg to 0). But after a few days the flushing came back quite prominently, especially on the side of the face I didn't sleep on the night before and during the later afternoon and evenings and night. The last weeks I was just busy with avoiding      anything that aggravates it and with hiding behind the fan and cold packs again. Really tough and it has depressed me to some degree, as I remembered again how dreadful this constant flushing thing can be. Decided to go back on a low dose of mirtazapine again yesterday, as I want to calm my face down for an extra while. This is the proof for me that mirtazapine really is one of the key meds for my flushing, together with clonidine. The reason I discontinued it has also changed lately (some complications and I need to wait a while), so the actual need is not there for now. I'll add also pics from the flushed me from the last days/week.

Update February 2010 

Not been doing too well the last few months. Started with seb derm, around the mouth/nose. This happened before in the winter, but the rash is quite stubborn this time it seems. Use ketoconazoicum 2% in eucerinum cum aqua for it, only on the effected skin and not the rest as my face flares from it. It's not terrible, but just red rashes around the mouth, scaly as well. Then I tried Plaquenil for a few weeks, not to my success unfortunately. I got big itchy fluid-filled welts on my cheeks and acne on my forehead. The seb derm seemed to worsen as well, although probably not related. On top of it I got very burning, sore eyes, till this day actually. An eye doc said it was keratitis, unsure if it is related to the plaquenil, but after discontinuing several weeks already, only the acne is clearing up, together with the welts but the eyes remain sore. New appointment at the end of the week. I didn’t notice much flushing wise, but the derm also told me it would take several months to start kicking in (just the side-effects kick in immediately, nice..). The redness seemed to worsen at some point for me. I’m on my old meds still, remeron, clonidine, propranolol and Xyzal. They seem to keep me sort of ok, although I still flush and still have very bad days, where I am red as a tomato and look and feel shit. The 24/7 flush is just cut off this way, it seems. Far from perfect, but as good as I can get right now I think. A friend is having success with botox (very bad flusher and burner for many years and not responding sufficient to medication and it cuts down her flushing dramatically), so am keeping an eye on that as well and might consider it at some point. Fingers are swollen and red, as usual in winter, but this is related to my Raynauds and nothing new and not very bothersome to me either. Am looking out for the summer and milder temperatures and more sun! 

April 2010 

All is going relatively well. I'm back on less than 15 mg of the remeron, only 15 mg of propranolol daily instead of the usual 40 mg and half of my usual clonidine dose (0,35 mg only now). Trying to have my dose as low as possible, when it still works somewhat but is more easy to completely stop when necessary. I am not disappointed with the effect it still seems to have on my flushing and redness. Do feel extremely nauseous every time I cut down on the remeron, even if it is a little bit. One of those effects that make you want to go back to the normal dose, but I get trough. The antidepressant effect of the remeron has worn off, I can really feel the difference, but the time of the depression when rosacea was at it's worst is luckily long gone, so I have no real problem with that either. I do worry a little bit what will happen when I get off all the meds... And the hot summer is coming.. But I guess it's never the right time to get back to good old burning and flushing and full face inflammation, so perhaps not wait for the perfect timing in that respect. I have heard from Dr. Chu that he seems a clear pattern in his female (rosacea)patients when they get preggers: about 40% is doing better then, 40% get's worse and 20% stays the same. So nothing to predict in that sense. I do know a friend who was doing much better rosacea wise when she was expecting. Anyway. I have tried to get as much sun as possible in this spring time, after reading on the forum about the beneficial effect (presumably) of Vit. D. Supposed to be anti-inflammatory and a regulator for the immune system in immune diseases and some claim their flushing and redness are less when taking oral Vit. D tablets. I do feel that having (somewhat) more sun and tan (never face though, always a hat and face in the shade if possible, sun makes me flare up enormously) makes my rosacea skin somewhat better, so will try to stick to it.

28 June 2010 

I recently stopped with mirtazapine (and anti-inflammatories and antihistamines I took) AGAIN, and am on a very low dose of clonidine and propranolol now, and -knock on wood- I have been doing rather well! My derm in London (dr. Chu) believes it can sometimes just be a case of calming the rosacea down and then you might not need the meds anymore. Each case is different, I still need to make adjustments like a mild fan often, and some foods still make my face feel like it's going to explode, but I hope things will stay this bearable. Have to stay out of the sun and heat still, otherwise it's misery (face-wise) for the rest of the day, but I hope this way the extra weight that came on and stayed on no matter what I did will be gone soon. Appetite is back to normal again luckily, not hungry at all actually, whereas before, the medication made me feel like I hadn't eaten in a week (mostly just an hour earlier in fact) and I felt like eating virtually anything. Which I didn't do, so I was both hungry all day and despite the low calorie intake still more heavy then I normally am. Fingers crossed it will come off soon. If the rosacea does play up soon and it will not be temporary, I do am willing to get on the meds again when possible, as I'm rather chubby and happy than thin and miserable obviously. Why can't they make meds without side-effects??? Happy summer to you all : ) Ps; the colonoscopy in the spring went well, believe I didn't come back on that one, only mild microscopic colitis there, less than it was 5 years ago. So the avoidance of gluten did help after all. No need for further medication in this stage, luckily. No symptoms or problems from it either. The seb derm seems to be completely related to cold weather, as soon as the temperatures go up, the rashes go away again, so apart from some scaling on the cheeks (and the usual pink-reddish color sometimes and odd p&p), no more rashes there.

August 2010 

Things were going very well for some time. The remeron break caused once again big time flushing and burning and redness after the one week mark, so I just forget about the whole idea of effortless slimming, and have to do it the hard way. Back on remeron.. Being chubbier than normal I can handle as well on top of everything else I suppose.. Join the cue :)  Back on 15 mg mirtazapine and low dose clonidine and propranolol now and can keep my face not flushed most of the time, avoiding triggers still obviously. But I pushed my luck too far a few days ago it seems, as I went for a very long walk with my dad during the midday heat and sun. Did wear a hat, but the sun reflected on the white stones and have been bright red and burning since. Have been taking some anti-inflammatories (diclofenac) but they didn't help too much yet. Now everything makes me flush again : ( Can't believe it, it went so well for some time. NEVER GO OUT IN THE SUN! I normally only do this early in the morning or very late in the afternoon, but I guess I felt that I was invincible today. Stupid. So hope it's just a flare up and will calm down again in time. But it's painful and makes me worry. Have ordered brimonidine powder from a Chinese manufacturer. My skin doesn't tolerate the brimonidine eye gel, so I now go for the pure and active ingredient and will mix it myself with water and apply to the rosacea skin. Perhaps it will blunt redness and flushing for me... Cost 200 dollars, so no joke, but perhaps it is very effective; have to try it. I expect it to arrive by the end of the week. 

November 2010

I'm just back from a trip to London to see Dr. Chu. As things go pretty acceptable with my skin, we decided that I will stick to my medication. It's such a shame it doesn't seem to work for everyone, but the effect I get from mirtazapine, clonidine, propranolol and Xyzal is very good. I went from flushing 24/7 and being bright red and swollen to rosy cheeks every now and then and having (real) flushing episodes perhaps a few times a week. I do avoid sports, sun, stress, very hot rooms etc (that guarantees bad flushing for me still), but life is much more bearable (and enjoyable!)  again and I find, that the longer I don't flush, the calmer my blood vessels get. I do have still spells where I flush more, although shorter lived and easier to stop it again. For instance in the last week of my cycle (hormone related), or when I eat poorly, or when I am very stressed, or when it is very cold and dry outside, or very humid. So the rosacea is not gone, it has just improved to a degree for me. Dr. Chu has the approach that the flushing needs to be stopped, before the rosacea can improve again. He has a vast arsenal of medication for this though, many I haven't tried yet, as the first treatment option seemed to work for me. But he says he sees people coming in with severe rosacea and leave with very mild rosacea often. he does sees the worst cases though, and he treats with unorthodox medication often, as he thinks outside the box, but he is a professor in dermatology and specialized for years and years in acne and rosacea, so I fully trust him.

Strange enough he has always said to me he wouldn't recommend me to use IPL or accutane. I discussed with him the good results some rosaceans get from it, but he is not convinced it will help with the vascular and hypersensitive subtype that I have and it has a risk of worsening it he said. So, from his experience and my own, I do start to believe now that when you find something that attacks the flushing, your skin and blood vessels can actually normalize again, to a degree. The problem is that rosacea is always lurking. He told me about a severe patient, and it took him more than a year of treatment before she improved. Then she used a mild steroid inhaler once, and she was back to square one and it took him another 6 months to calm matters down. I burned so bad for a long time, my skin was actually dry and peeling and scaling from the excess heat, it is really a dreadful thing. But in my case medication actually did eliminate a portion of the flushing and with that the burning after time.... It might take some time, and I would advise anyone with bad flushing and vascular rosacea to start trying several medication or treatment options. One at a time and give it time to see if it works or not. There must be something out there that can get it back under control, and it can be trial and error initially. I would start with the real medication and from there on go down to natural approaches if needed, or diet or IPL/laser. Apart from that things are ok. I keep having trouble with inflammation of the cartilage of my right ear though. It has been treated a few times already, and pieces of cartilage and skin have been removed and the outer and middle part of the ear has been sown back, but it keeps coming back. 

The derm in Holland suggested a corticosteroid cream, but I can't risk that, as I fear it will worsen my rosacea again. The idea was to try to calm it first with a zinc cream and then perhaps take the hole part out with surgery. I discussed it with Dr. Chu and he said I would be crazy to 'mutilate' the ear like that. He said the cartilage and skin were not swollen, so he didn't think it was chondritis, and I would do more harm then good with removing it, as it would most likely come back to the remaining ear. So the idea is now to keep it from getting worse with the zinc cream. And I cut a hole in my pillow around the area my ear rest on, because the pressure of the pillow makes that ear lobe go red and painful the next morning. I also already tried Elidel cream and diclofenac cream with no effect. Prof.
Chu says not to use the steroid cream at all, ever, as the risk is too high it will stir up my rosacea big time. It might be related to the rosacea actually, he thinks, as he sees patients with rosacea mainly on their ears, or noses or even scrotum (!). Didn't know that! I also asked about hormone use (for a gynecology purpose), but he warned me for it. That was a downer for me actually, as I might really need them... : ( Rosacea is going ok, I have been eating some bread and cakes lately and my skin does fine, so that was a huge surprise. I am now wondering if I actually might want to introduce some gluten in my diet again.. Not good for my bowel though, so probably not, but bread is so nice!!! I forgot how much better it is than rice or gluten free products... The right cheek is a bit more red then the left, which is normal for me, but the inflamed ear seems to be related to it, because when the ear plays up and is red and burning, the cheek goes with it : ( That's part why I brought up to the derm to get rid of the inflammation there altogether. I hope the winter won't be too cold, as wintertime is the worst for my rosacea. 

Had a few operations this year, mainly to check on my bowel inflammation (colitis) and all seems ok. Still active colitis but nothing too disturbing. Because inflammatory bowel disease makes you more vulnerable for bowel cancer, they like to check my bowels every 4 to 5 years. Polyps can be removed then (although I never had one so far), as they can turn into tumors easily.

March 2011

All is going so so. I started with some probiotics 2 days ago and had the most dreadful stomach cramps and all that comes with it within an hour. Perhaps I need to start very carefully with it, my bowels are a weak spot as well. I still have some of the pains in the right side of the bowel area, actually since last September, but I don't feel like having it checked, although I already have a referral for a specialist. Am a bit worried they will have to take X-rays there and prescribe meds that blow my face up, as a matter of speaking. A famous Dutch young actress died a little while ago of bowel cancer, so that's something that goes through my mind sometimes I have to say, but I'm probably highly hypochondriac there, so will probably just wait some more here. My skin is not too good, not too bad. Still have the seb derm rashes around my mouth and inner cheeks, quite annoying and he rashes are very central in the face, so it's very good to see, I find them very unattractive, but luckily they don't itch or burn too much. I put some cream on it, ketoconazol in a mild base, (the Lamisil dr. Chu advised a while ok seems too harsh for me) and it seems to keep it from progressing, but when I don't smear it for 2 days it's back to as it was and if I use it too much the skin gets red from the cream, as I can't really have any topical actually.

 Skin is soooo sensitive, it makes me crazy sometimes. So it's now somewhere in between bad and good. Hope summer and warmer weather will make it disappear again, as it usually is there in winters for me, and most from what I read. Still some nice P&p's on forehead and a few on the cheeks, nothing too horrid but clearly still worse then it usually was (due to the Plaquenil clearly, it started back then). I stopped with the plaquenil though, so in some time it should face again, hopefully. Eyes also still bad, I had another check up with the eye specialist, last time it was keratitis, this time, after 4 weeks of lubrication with eye drops, she thinks it's just ocular rosacea now, very dry eyes and from the inflammation of the rosacea and she can't do much about it anymore. I just have to use the eye drops, which helps a bit, but only temporary and they don't solve the problem. They don't seem to make my skin significantly worse, but I suspect them a little bit of adding to the rashes I have to say. Even though they are without preservatives. 

I just continue with them though, as I don't want my eyes to get even more dry. Am now thinking about making a mask for my eyes at night, like the one you get in the airplane to sleep. Today was the first spring day, finally some sun as well, so I had a long walk, with my legging held up very high and sleeves up, so I would get some sun on my skin, and some vitamin D (D3 is important I hear on the forum) and I rather not take any more medication, so I try now to get some sun hours daily, if possible of course and with my face shielded by a big hat. It was a good feeling though I was a bit flushy during it, but nothing too major. I ate pretty badly Tuesday, I really had such an appetite for long simmered beef, which I never eat, so after hours and hours of preparation, I had a massive flush      and the next day 8 (!) bright red pimples on my cheeks, ├índ I flushed all night, despite the fan on a strategic place. So that was not a good idea. Luckily someone else did really like the stew. Am back to the old boring brown rice, organic chicken, veggies and salad today, and I am craving for something sweet, like the pear from the freezer I have been eating sometimes lately, on advice of fellow reddy Sam. But I want to loose a little bit of weight, if possible on this monstrous meds, so I eat in the late afternoon now and before 17:00 if possible. I ate quite late before and that's supposed to make you gain more weight. But it's so nice to eat late! Now there is a massive amount of time after diner and before bedtime where I can't eat and it seems like a big boring hole. Am trying to cut down on the portions, but I felt hungry all the time! It's a lousy state to be in, to be honest. I feel for full time dieters.

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