vascular-rosacea-experiences-of-a-patient

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IPL update, May 2006

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• After 4 different test patches, done with the Lumenis One with Dr. Crouch, things seems safe. They all gave a certain degree of paleness and little side-effects. The last test patch was made over 2/3 of my left cheek and we felt confident enough to start with a full face treatment early April. It was a bit painful, but not too much. After the treatment I was very red for an hour and then my face seemed to settle and became more pale again. The first 5 days were not too bad. I had some extra flushing and redness, but within the expectation range. However, on day 6 something seemed to click and I experienced severe redness and flushing and burning for days and night on end. Dr. Crouch considered this reaction as severe and wasn’t used to such a strong reaction to the IPL, so late. After the symptoms worsened he advised me start a short course of oral prednison. To calm the inflammation down. The dermatologist I saw at home in hospital felt better on a milder NSAID to start with and prescribed me diclofenac 50 mg, three times a day for a week. I’m now almost 3 weeks post treatment and the redness and flushing finally seems to calm a bit down. Not sure yet what the advantages of the IPL have been. According to both Dr. Crouch and the local dermatologist my reaction might indicate photosensitivity, meaning that IPL and other light devices are not a first choice in the future. Laser, and particularly the Nd:Yag might still be an option though. To be continued..

Update IPL

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• me a course of diclofenac to calm things down and I'm happy to say that after one week of diclofenac my skin has calmed down considerably. I am even thinking about asking for a longer course, to see what benefit it will have long term. Maybe this drug is helpful for others, especially to calm down post IPL flares etc. It definitely hasn't had any bad effect on my (extremely sensitive) skin and extreme flushings. It also worked as a painkiller Smile

Update August 2006

• Update: lately things are not as good as they used to be. I'm not sure if it comes from the IPL I had and the bad reaction afterwards, but I tend to flush much more and easier again and have a harder time again with my rosacea. A lot of bad days in one week, or month. I try to watch my diet closely and eat healthy. Lately I notice that beeing outside when the sun shines makes me flush terribly. I bought a heat from Coolibar, as well as a special scarf that protects my face from the sun. Unfrotunately I look pretty rediculous, all wrapped up and I get loads of strange remarks out on the street. I try to ignore them and listen to my digital music instead, but things are definitely on a downer again lately. I still take the same medication SEE LINKS TO REMERON ARTICLES IN RELATION TO ROSACEA AND FLUSHING BELOW!!!!!
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• Gabapentin/remeron 4 hot flush
• Remeron = anti inflammatory
• Remeron for hot flashes
• REMERON FOR NEUROPATHIC PAIN
• Remeron/clonidine 4 flushes

Fall 2006

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• I’m having problems with my right cheek ever since I fell asleep on an icepack. I can hit myself for it over and over again, but no point. It has been one month now and the burning is pulsing, throbbing and almost constant. I will ask my dermatologist next week for a painkiller, but when I read about Lyrica1, one of the side-effects mentioned is facial flushing! I know it is only rare, but still…we are so much more prone to such side-effects, with our bad blood vessels..

Neurontin

• * Ok, got a prescription for neurontin, but My God what a hard work it was.. Got myself sort of into a difficult situation now. My GP is a very nice woman, and open for almost all my demands. I've seen her a lot the last month, due to this nasty cheek, and she just prescribed me an antihistamine I wanted to try; hydroxyzine. Now the assistent would discuss with her today about neurontin. In the meanwhile my dermatologist called, he's just back from holiday. I explained my problems and asked for a 2 week try of neurontin. He agreed, thought it was a good way of trying to figure out if it is neuropathic or not. Then the GP's assistent called me back, saying the GP DON'T want to prescribe me the neurontin, because it is for epilepsy and she totally disagrees. That is very unusual for her.. to explicitely say no. I feel she must be tired of my constant demands for this and that, and I'm like a walking medicin cabinet, lol. SO, now I do have a prescription for the drug for two weeks and the green light from the dermatologist, which is most important of course, but I don't want to piss my GP off, since whe is a very nice woman and has been invaluable for me over the past years. I don't want her to get really annoyed once she reads in her memo's (they all share it in one electronical database thing) that I DO take that neurontin now. What's best? I was thinking just try it out, discuss it with the derm. in2 weeks time, if I can continue with it, let him write her a letter or give her a call and explain it to her. Unconventional medicin it seems, but it just might help me, you know? SIGHT! Rolling Eyes Why is it all so difficult sometimes. The derm says it is quite hard to damage nerves, especially when the skin itself isn't really burned or damaged. Which isn't the case with me. To be continued... * Ok, I take 300 mg. at night now, second night last night, and when I woke up I was pale. I mean PALE, as a gost. It has been a long time back since I looked like this. Now, after I ate something and started beeing busy I am back to my pink cheeks and the burning is still there, but not as sharp. Also I don't feel so spaced out as wednesday. Have a bit more headaches, but that should pass, liek you said. I will continue this drug for at least one or two weeks and then see then. I will also buy a blood pressure measurer today. Can buy one very cheap, and check it daily. Posted: Mon Sep 11, 2006 10:53 am Post subject: Reply with quote Edit/Delete this post Report Post Ok, update. I have to say first that I don't take too much of this medicin: usually people take up to 1200 or 1600 mg as an average, and my doc prescribed me 900, of which I take 600 mg daily now. One tablet in the early evening and one before sleeping. The first side-effect (dizzyness, bad coördination etc) has passed luckily, pretty quickly. I do have to say that I have a bad cold, full nose etc. Together witha long list of side-effects this is mentioned as happing 'often', in my meds encloser. But nothing too bad. I have a bloodpressure measering thing, because another side-effect that hapens often supposes to be hypertension, and I take all my meds to lower it... So far my bloodpressure if fairly low, the way I want it (I have check ups with my GP and dermatologist every now and then and they agree this is still ok for me): I'm around 98 over 60, still while on this medicin and the diclofenac, which raises blood pressure as well. Dies it still work for my burning and flushing? I think it does. I have had a bad day, but that was due to going to the football, getting all over excited, having some chips (BAAAAD for me) and having hot weather here. But I still am more pale then usual I would say and the pain has definitely become less sharp. See how I'll be at the end of the week.

Info on Gabapentin

• Gabapentin
• Gabapentin
• Gabapentin 4 pain disorder

Advice on anti flushing meds

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• Good anti flushing meds for most: -clonidine (gives rebound flush, so you need to take this drug long term and every 8 hours). -propranolol -mirtazapine -antihistamines (Xyzal for instance). You can take them individual or all together. They all work on different receptors and have different mechanisms, so they usually make the attack on the flushing more effective when you take them all. Best to start with one and then add another in that case, so you can monitor well how your body responds to every single one of them. They all help me. Side-effects you should be aware of are generally light headedness and dizzyness in the beginning. Will wear off after a while, when your body adjusts. Best wishes Hi, I am no doctor, but if I understand it correctly the named drugs work all on different receptors to attack the flushing response. Clonidine helps (for most) not only because it lowers the blood pressure, which in its turn helps to keep your blood stream more 'centralized' in your body, and less in the extremeties (fingers, toes, face), but it also does something with the central nervous system. That's why clonidine is registered as a helpful drug for menaupasal flushings. Propranolol works differently: it is very helpful for the 'fight and flight' reactions and flushings: it helps to limit the amount of adrenaline that the body produces: a hormone that can be the set of for flushing. It is also a blood pressure lowering drug. Mirtazapine is an antidepressant and works in a very different way (not completely understood yet). It is also registered as a drug to prevent or aleviate menopausal flushings. But it works differently from clonidine. I find that clonidine and propranolol together work better then one of them. Dr. Tony Chu often prescribes them together for that reason to patients who have a severe flushing response. They help me with the general flushings and more specific flushings, although a big amount of stress still makes me flush, but not as quickly as it used to and it is also gone again sooner. Hope this helps, best wishes Hi Jason, as far as I can tell clonidine seems to help with the general flushing respons. It might also be extra usefull for women in menopause, but that is not the case with you I expect ; ) Propranolol works on different receptors and helps with general flushing but also specifically with the adrenaline-related flushings (when you are nervous or stressed etc). For food related flushing I take an antihistamine (Xyzal). I got all my medication prescribed by a good London dermatologist: Dr. Tony Chu. My Dutch GP knows about me visiting him and supports his sugestions, so it has not been difficult for me to take this much medication at the same time. I know for many on the forum it might be a bit controversial perhaps to take this much, but for me it helps me a lot and I have taken the IPL and laser route earlier, without relief. So for now this gets me thorugh the years while we wait for a cure. (I take clonidine, propranolol, mirtazapine, Xyzal and diclofenac). I also get blood tests every now and then to check my blood levels, lover function etc. Best wishes Avatar Join Date: Jun 2005 Location: The netherlands Posts: 182 Send a message via Yahoo Default Hi Penny, I have tablets of 0,150 mg of clonidine and take half of then every 7 hours approxemately. I started indeed with a lower dose, but find this dose to be more helpful for me. Dr. Chu presribes clodnidine and mirtazapine indeed often together for bad flushers. In my case (extreme bad flushing) he also added propranolol to it. I take them all together. I did read about the interaction between clonidine anfd mirtazapine and asked dr Chu, but he never found them to have any negative effect on the anti flushing actions among his patients. I also asked my pharmacist about it and he told me that the only interaction he is aware of, it that clonidine can lessen the antidepressant actions of the mirtazapine, and mirtazapine the blood lowering actions of the clonidine. Mildly. But there is as far as he knows no effect on the way they limit flushing. Which is of course a never intended side effect of these drugs. Hope this helps.

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Update Gaba

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• Just saw my derm and he was very pleased and intrigued with the latest improvements. He wants me to continue with the gabapentine, together with my other meds (YES!), I was armed with some very bad and red before pics and pale after pics (see my webpage, will be updated even more this week) and medical references for gaba and hotflushes. There were 5 docs there gathered and they were impressed luckily. They wanted to keep the pics for documentation and said I was an exceptional case for them, since I'm the only one in the hospital that has such a bad case of vascular rosacea and flushing. So far it seems the attack of my flushing from different angles seems to pay off. Low dose accutane is still another option, but I can't use it on top of all the other meds I already take probably and besides that the derm still wants to experiment with very little skinareas for IPL and Yag lasers in 4 months time. Since my other test patches are still pale (both the IPL one and the YAG). No more full face treatments EVER for me, according to him, but IF it does help locally a very long treatment plan...with a little bit treated every time. Luckily I don't seem to have to pay for them, since this is a professional hospital and no private clinic Smile The gabapentin (neurontin) definitely makes my face less painful! Especially the right cheek burned non-stop before, no matter if it was red or pale and strong anti-inflammatories didn't help to calm any of it down. Now I only feel pain and burning when I have a real full face flush, which happens every day for maybe 30 minutes, usually around 18:00 when my body temp rises I think.. I found many links for gaba helping with menopausal hot flushes, which are in essence sort of similar to our rosacea flushings, according to my derm. So that might help, just as the dact that my face burns less and triggers less flushing by that. Bad developments: the last 4 days I'm getting big red p&p's over my cheeks. Usually I never have them. And my nosecold just doesn't resolve: have got it now almost ever since I started this drug. The p&p's worry me the most. Not sure if the gabapentin is causing it. Did taper my dose down a bit today (was 900 mg, now 600) and maybe will continue to do this and see if the skin get's better. But even on this lower dose the right cheek starts to burna nd hurt and throb again Sad This is not the way I would have liked things to go.. To be continued

• The rash continued for a week, before I became suspicious of the glycerine the shell is made of. Checked with the manufacteror and it appeared to be made from gelatine, made from pork skin. And pork can make me break out. So bfore stopping neurontin I deceided to take it without the shell and most of the bad acne is gone by now. BUT, after 3 weeks I felt my flushing became worse agaian and after each dose of neurontin the flushing actually increased for a while. I found out that vasodilatation and hypertension are mentioned as appearing “frequent”, although this varies with different sites and others say it is only happens in 1% in controlled trials. My blood pressure raises from 90 over 68 to 120 over 80 and back though (I have a little measurer). That is not good. And I've become very suspicious about the vasodilatation. Since I tapered off the gabapentin this week the pain in my cheek is back but hopefully I can convince my derm. to try another medicin. He will call me tomorrow. I’ll ask him for another painkiller: I checked the internet again, and looked for neuropathic pain. There is a special condition, when one side of the face has nauropathic apin, atypical facial neuralgia or something. Anyway: I checked all the medication that is mentioned there. http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Feat/jun00pain.cfm&pub_id=8&article_id=536 Amitryptiline is an antidepressant that helps often for burning pain, but I used it a little while 3 years back and it made me flush very badly, so no more. The pharmacist later explained to me that it opens up the little blood vessels in the face, so that it was on the cards. There are other drugs, like SSRI’s (Paroxetine, Citalopram Effexor). To me carbamazepine (Tegretol) seems my best next shot. I checked it’s side-effects and they are usually mild and nothing to do with hypertension, vasodilatation, flushing etc. Rash is mentioned unfortunately, but that’s the case with ALL anticonvulsants, and those are the drugs that can help blocking the pain sensations coming from the brain. I guess eventually there needs to be focus on why exactly my right cheek hurts and burns, even when it looks not very red. I will ask my derm this on the phone as well tomorrow.

Gaba update/ Carbamazepine

• Hi, I've been taking neurontin for about 3 or 4 weeks now and at first it worked wonders, making me more pale and helping a lot with my neuropathic and burning pain. But after a couple of weeks I'm getting the feeling that it actually starts to make me a bit more red and even flushed sometimes. Very difficult to tell though and lately my right cheek is playing up again and has another sunburn-like reaction, so I take diclofenac (NSAID) with it to hopefully calm this redness and burning/ flushing on the right side down a bit... I noticed that "vasodilatation" and "hypertension" are mentioned as "frequent" side effects for neurontin. That is not flushing (which is noted for Lyrica), but still not good for us. So I'll start trying another painkiller by monday; Tegretol (carbamazepine). http://www.mentalhealth.com/drug/p30-t01.html http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Feat/jun00pain.cfm&pub_id=8&article_id=536 http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm Carbamazepine doesn't have vasodilatation, flushing, hot flash or anything mentioned as side-effect, but because it acts an an anticholinergic, it works on the central nerve system and can cause drowsiness etc and thereby increased blood flow in the face. Like all medication that works on the CNS. http://en.wikipedia.org/wiki/Anticholinergic If you check the given links out, you'll see that neuropathic pain management comes down to either tricyclic antidepressants like amitryptiline (which I tried a few years ago and made me definitely flush a lot more. Flushing is mentioned with all the tricyclics, and my pharmacist explained that this drugs can widen the little blood vessels in the face), modern SSRI antidepressant (which give facial flushing as well often), anticonvulsants like Carbamazepine, phenytoin, gabapentin (or Lyrica) and lamotrigine and eventually certain antiarrhythmics, such as lidocaine and mexiletine. Also there are opiods, but they can cause facial flushing AS WELL (SIGHT................). So for anyone else I would bet on either gabapentine, which is registred as helpful for menopausal hot flashes as well (does something with the calcium channels and regulates body temperature, which is promising for us), or the carbamazepine, which I will try myself by next week, so I'll update on that one as well. They there is Trileptal (oxcarbazepine), which is a derative from carbamazepine (Tegretol), like Lyrica from neurontin, but Trileptal has a high insidence of facial acné and derpession, and I rather give the Tegretol a fair chance first. Besides: Tegretol has a proven track for the treatment of neuroptahic pain and Trileptal has still studies running for this.
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• Carbamazepin
• Carbamazepin in pain treatment
• Neuropathic pain/Carbamazepin

Update

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• Also have to add that I used a coolpack again 4 days ago and seemed to be back at square one with the right cheek: have a sunburn like reaction going on again, with redness, fierce burning, flushing and even some dryness/ scaling of the skin, so not good. I don't wanne learn obviously Sad Take oral diclofenac now to help calm down the burn reaction and am at a low dose of gabapentin. Not sure at all now what causes what and difficult time for experimenting... UPDATE: ok, finally stopped with the gabapentin. It seams to really make my flushing worse now... Don't have a clue why it did work for the first weeks, but I stopped with it a while and then took it againa nd the flushing went up, so I guess it has to do with the vasodilating action it can have.... Sad, but when I flush less I also have less brunign and pain, so for me the priority lies with keeping my skin unflushed. It seems a bit like dragging water to the see if I continue taking this med and thereby agreevate the flushing : ( Another small chapter in this rosacea diary....

January 2007

• Things are progressively going worse again the last couple of months. My skin is very red and reactive all day and I flush and burn a lot more again. I'm not sure why exactely. The fingers of my hands are very swollen and red as well and last month a temporary replacing dermatologist wasn't too sure about it and made me undergo some more blood tests to rule out increased ANA levels and some systemic conditions. last week she called and there was only one bloodtest back, but it was not good: there are an alarming amount of "cryoglobulines" in my blood and new tests are needed to find out of there is an underlying condition, like lupus or others..I was tested on lupus before, and it came out negative, but she said that is no guarantee and it might have been masked or something. 13 februari I have to see an immunologist (?, doc. specialised in immunology) and we will look further into this. Somewhere I hope something will come out of this, so that there can be something done about my inflamened face and blood vessels altogether. But I have had so many tests in the past and so many disappointments, that I am preparing myself for the old answer that there is nothing to be found and I have to deal with it. To be continued.. I am currently not taking any medication for the neuropathic pain, but I did start with clonidine this week. Instead of the moxonidine I have been taking for almost 3 years. In Holland the brand I use is not available anymore this year and the generic gives me bad headaches. Apart from that I started to doubt recently if it still works for me, giving the bad state my skin is in. I also read about one of the side effects of it beeing facial flushing and vasodilatation and that raised some alarmbells. I contacted the manufacterors and they tried to find out if the drug causes only vasodilatation to the main big blood supplying arteries in the body or also to the peripheral bloodvessels, in the face and hands for instance. They came back on it 2 weeks later and couldn't find anything about it. Clonidine on the other hand does have reports of vasoconstriction of the peripheral blood vessels and it supposedly helps for hot flushes, so I discussed it with Dr. Tony Chu, my doc in London, who has good experiences with it and gave me the green light for it. I have bene using it now for a couple of days, together with 30 mg mirtazapine (Remeron) at night, which still works ok for me (for the flushing and as a mild antihistamine and antidepressant) and propranolol (40 mg, 3 times a day, also for the flushing) AND fish oil at night. Will post some bad flushing pics later.

Update March 2007

• I've been using clonidine for a couple of months now and so far I think my flushing and redness has decreased, overall. I do have bad days ad good days though and I still flush badly from warm temperatures and all the other triggers. And I still use a fan most of the time (from a good distance, to avoid rebound flushing). On top of the clonidine I still use mirtazapine (AD) and propranolol.The AD doesn't work like that anymore since I started clonidine, since it is an antagonist of it, but it does work as an antiinflammatory and for the flushing still. I still can't use anything on my skin unfortunately. No sunscreen, or moisturizer or anything. It burns too much. So for the last years I just wash it with bottled water and thats it. I’ve had a test patch with the Nd:Yag and IPL (both Vasculight machine) in the hospital here in January. The IPL patch is invisible, the Nd:Yag one is very slightly visible. Since the test patches I made with Dr. Crouch in Swindon are still much better (more pale)I am planning on going back to his clinic after the summer. I find it easier to be positive and to deal with everyday life etc now, because I was in such a terrible state a year before. Then I flushed all the time and could only stay a bit pain free in close range to the fan, and with cool air (12 degree or so, not above 15!). And chewing ice cubes and using cool packs. Even a trip to the shop was like hell, and I was deep red and flushing as soon as I came out of my 'zone'. Right now this has improved, although I do use a fan when I can, but not too close (rebound flushing etc), and I can avoid flushing better now during normal day activities. But still it is a massive limitation to most of my life.. It influences every aspect of it and also my self confidence and feeling of freedom.. I would have loved to travel a lot, but am limited now due to temperatures, vaccination (can't take them) etc. Also with relationships it is a difficult combination, in every respect. And with jobs, going out etc. I can't go dancing anymore, like I used to and loved. I can't go out for dinners often, cause my diet is so limited and it is usually too hot inside a restaurant. Although i do go out often, to the pub or out for meals if I really want to. But not like before. Friends have to make a real effort when I come or when they come to me, for instance, since it is always quite cool at my house and I need to temperature to be not too high at their place either. Those things... And it has panicked me for a long time that my face was so red and burning and mostly that I couldn't control it enough. I felt desperate. Well, now I feel happy to be alive and much more positive, luckily. I feel positive now probably because my rosacea is a little bit better then in 2005 and I appreciate all the things I can do now that I couldn't back then. I can't be bothered anymore with how my face looks. Strangely (to me) most people think I look terribly healthy and girly (some even think I am 18 instead of 27!)I just want to avoid full face flushing, where the vessels stay dilated for hours. That hurts and burns so badly. General redness is not too nice, but of less importance right now..

23 March 2007

• Friday 23 March, 2007 I woke up today with a deep red “mask” on my face. It felt tight and burning, like I had sunburned it badly. I know this feeling too well unfortunately. The week before I had mainly bad flushing and redness on my left cheek. The right one is usually less red. But last night a friend came over and insisted very sweet to make dinner, totally using my limited list of approved foods . She made delicious asparagus soup, from asparagus, potato flour and some carrot, then mash from sweet potatoes, broccoli and carrots, then chicken fillet and potatoes and then pears as dessert. All very delicious, and later that night I wasn’t flushing too bad or anything, but I just woke up dreadfull.. Not sure if there is a link with the food intake from last night. I also have been experimenting with leaving out the diclofenac (NSAID) anti-inflammatory medication I usually take at night (50 mg). I had a very sore stomach for a while and suspected the diclofenac. This might perhaps have had some influence on this current redness and flushing  I also stopped taking my fish oil tablets a few weeks ago, to check if this had any influence on my symptoms. Perhaps I’ll try adding these again soon. I’ve been watching Oprah Winfrey lately and she had a topic on The Secret: it is all about energy: what you feel and radiate is what you get back. So if you are very negative and expect bad things to happen, they will happen and you will attract bad energy. Might make sense. I have a hard time often dealing with the very bad days, when all I can or want is sit in front of the fan, windows open, or take the car and drive with the widows open or go for a cool walk  I try to stay positive then, remember myself that this bad flair will pass again, think positive, see the benefit from suffering (it supposes to give strength of mind and spirit, make you appreciate the good things in life even more, have more consideration for others who suffer etc), and seek distraction in work or social things. But I can’t help but feeling wore out often then, and down. My skin is flaking, like it has been sunburned, from the heath that seems to come from within and I can’t put anything on it to sooth. I feel the stronge urge to do something about it, but I have little choice. I feel alarm bells going off, saying “there’s something not right here in the body, fix it!”, but that fix is not there yet.. I’ll go out now and go for a long walk with a girlfriend, take my mind off of things.

3 May 2007

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• Hi, Things are going less good lately. I had quite calm skin in march and the beginning of april, but the last couple of weeks I got more and more flushing, redness and burning. But also a chronic running nose and sore eyes. Because it hasn't rained for something like 40 days now here and has been very warm ever since, it might have something to do with seasonal allergies. I already have problems with dogs and cats and parfums.. So last week I tried a drug called Telfast (fexofenadine, an antihistamine). The first days my skin really calmed down and I already started to get overjoyed. But after a week I start to have more and more rosacea problems again. The last 4 nights were bad, whereas I normally never have these really bad flares at night anymore. And when I wake up and during the day my skin starts to look more an more red and flushed. So after the weekend I'll try to stop with the Telfast again and see hwat happens.. Am a bit dissapointed about this, cause I thought for a little while I found the.... "eg of Columbus" they call it here. The missing link perhaps. Apart from that I'm doing so so. When my skin is less reactive and I don't need to cool it all the time my energylevels raise again, as well as my general mood and I get out more. Now I need half of my energy to stay a bit cooled things are less joyful again. I have applied for a job a few days ago, and got an invitation yesterday for a meeting. There will be 15 or 20 applicants, we meet in some hotel, need to do tests in groups and have individual talks and then they choose 3 people for this job. It is at a big state institution that provides loans for students. Will see, but they are not yet informed about my rosacea and the special workplace I need. I have a special wellfare thing here in Holland because I can't work at a normal (= warm) workplace, and need a special room where I can have ventilation and cool air. I'm very happy with this status, but also a bit insecure about it towards potential employees. Let alone other applicants! It is warm here, so I will take my fan with me. It's not that big, but still big enough to make me feel awkward. To be continued.. I also had a test laser patch at the hospital here last month, with Nd:Yag, but it didn't turn too pale so far. A little bit, but it stirred my flushing up as well for weeks :(

12 March 2008

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• Hi, Things are going less good lately. I had quite calm skin in march and the beginning of april, but the last couple of weeks I got more and more flushing, redness and burning. But also a chronic running nose and sore eyes. Because it hasn't rained for something like 40 days now here and has been very warm ever since, it might have something to do with seasonal allergies. I already have problems with dogs and cats and parfums.. So last week I tried a drug called Telfast (fexofenadine, an antihistamine). The first days my skin really calmed down and I already started to get overjoyed. But after a week I start to have more and more rosacea problems again. The last 4 nights were bad, whereas I normally never have these really bad flares at night anymore. And when I wake up and during the day my skin starts to look more an more red and flushed. So after the weekend I'll try to stop with the Telfast again and see hwat happens.. Am a bit dissapointed about this, cause I thought for a little while I found the.... "eg of Columbus" they call it here. The missing link perhaps. Apart from that I'm doing so so. When my skin is less reactive and I don't need to cool it all the time my energylevels raise again, as well as my general mood and I get out more. Now I need half of my energy to stay a bit cooled things are less joyful again. I have applied for a job a few days ago, and got an invitation yesterday for a meeting. There will be 15 or 20 applicants, we meet in some hotel, need to do tests in groups and have individual talks and then they choose 3 people for this job. It is at a big state institution that provides loans for students. Will see, but they are not yet informed about my rosacea and the special workplace I need. I have a special wellfare thing here in Holland because I can't work at a normal (= warm) workplace, and need a special room where I can have ventilation and cool air. I'm very happy with this status, but also a bit insecure about it towards potential employees. Let alone other applicants! It is warm here, so I will take my fan with me. It's not that big, but still big enough to make me feel awkward. To be continued.. I also had a test laser patch at the hospital here last month, with Nd:Yag, but it didn't turn too pale so far. A little bit, but it stirred my flushing up as well for weeks :

July 2008

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• My skin is not doing too bad lately. I am still on the same medication and added also another one; an antihistamine (Xyzal), which definitely gives me a relief from environmental flushing (pollen/hayfever) and developped allergies. I have spend 5 weeks in the south of France last months and despite my worries at first it was great. My skin was very good. Perhaps due to the lack of stress or the fresh unpoluted mountain air. I don't know but it felt like a big victory. These days I try to not focus on my rosacea too much. I know my triggers and try to avoid the worst of them, like sunbathing, severe heat, alcohol, many foods (although my diet has broadened a lot now I have less problems with histamine containing or -releasing foods), parfumes and stress. I chose for now to not mess with my skin in any way and keep things as they are, instead of experimenting a lot with new things, because I know now how sensitive my skin is to anything new that enters my system. This gives a lot of time, energy en space for other things, which makes me overall a lot more happy. But I still cannot pretend the rosacea is gone. I sleep still with a fan and have to drink icewater or suck on icecubes when I am outside or anywhere warm, in order to prevent a major flush. The last week in France I had a kidney infection and had to take a massive and long antibiotics course, which really stirred up my rosacea for a week or two. The drive back home in a 40 degrees , hot car also worsened matters, ut after a few days of giving my skin rest things have gone back to normal. Which is me having a rosy skin, but my skin doesn't burn too bad aymore, only when I get more rosy, or flushed. Then the bad heat and burning crawls back again, ut in that case I can get my fan or coolpacks for a little while till the flush has died out again. This is a massive improvement to a few years ago, when I needed them almost 24/7 at a certain point and life was purely suffering, to be dramatic..

Good and bad days

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• PICTURES OF BRIMONIDINE TRIAL

December 2008

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• Things have been going well for quite a long time. When I am in the South it goes even better, perhaps due to the fresh air (mountains) and of course from having a good time. I'm still on the same medication, which is working well. Certain weeks or days are still less good, but manageable, and often also predicatable (hormone-related, I didn't stick to my diet, etc). But in general it has been pretty good. Due to the antihistamine I can even "pig out" sometimes on the 'bad' foods, like nice cheeses or creme brulée or pancakes or chocloate even.

March 2009

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• My rosacea is doing ok. I have had quite a red face during the last winter months, due to the cold I guess. But the flushing is not as bad as it has been in the past. 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, 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 in rather good control. Despite the temperatures getting higher. I am mainly flush free for most of the day, but need to have a very careful watch of my diet. 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 metronidazolcreme 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 rozy or red cheeks and vascular components, 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 have 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. I am not very happy with the difficulty it has become to keep my weight stable and normal. 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 lows 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 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 the clonidine and propranolol, which don't give me any side-effects at all, will help maintaining the good state my rosacea is in at the moment. I am advised to taper the mirtazapine of within 6 weeks. I went from 30 mg to 22,5 lately and already feel very strong withdrawal symptoms. I have been warned for 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

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• 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 depite I fitted in 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). See the added picture. It is slightly flattering though, because of the cool light and I took it early in the morning, when my skin is most calm usually. 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 a lot with avoiding anything that aggravates it and hiding behind the fan and cool packs again. Really tuff 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

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• Not been doing too well the last few months. Started with seb derm, around the mouth/nose. This happened before in 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 terrible. 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!

update

• 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 bur 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 disapear 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 lubrification 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 tey 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. But I have to adjust them of course, as they are too big and cover the skin under my eyes and the pressure makes the skin irritated and red with me, so I am trying to make it smaller and fill it up underneath with cotton pads that cover just my eyelids and keep them closed well during sleep. I don't close my eyelids properly, apparently, and the fan blows on them so I always wake up with dry eyes. So it's probably a mix of rosacea and the fan what's causing this eye dryness. Still can't wear contacts though, so I either see very little during the day or have my glasses on, BUT, they look like they are mummified, lol. I have the 'legs' of the glasses (do you call it like that?) and the pieces that touch the nose wrapped up in strips of cotton, so the plastic doesn't cause too much irritation on my skin. I really got red rashes everywhere the plastic touched my skin before I did this, and not just for 10 minutes after I took them off, bt for days.. It looks ridiculous, so I avoid to wear them when I meet other people, but behind the wheel of the car I have to, so I look rather stupid I guess. I think that no one will take me serious by the way unless they have the same problem with it. Today was the first spring day, finally some sun as well, so I had a long walk, with my legging hold 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 wrongly 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, ánd 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, orgic 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 Samina. 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.

Update 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 nouseous 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 boost for the immune system 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.

update 28 June ´10

• I recently stopped with mirtazapine (and anti-inflammatories and antihistamines I took) and am on a very low dose of clonidine an dpropranolol 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 then 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 then 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 colour sometimes and odd p&p), no more rashes there.

End of August, update

• Things were going very well for some time; back on 15 mg mirtazapine and low dose clonidine and propranolol and could keep my face unflushed 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 whote stones and have been bright red and burning since. Have been taking some anti-inflammatories (diclofenac) but don't help too much yet. Now everythign 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 rosacea inconvincable. 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 manufactoror. 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... Costed 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.

Pictures of brimonidine trial

• Link

Update 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 doens'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 is guaranteed bad flushing for me still), but life is much more baerable 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 specialised for years and years in acne and rosacea, so I fully trust him. Strange enough he has always sais 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 hypersnsitive 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 normalise again, to a degree. The problem is that rosacea is always luring. 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 the flushing and with that the burning after time.... It might take some time, and I would advice 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 in controle. 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 cartillage of my right ear. It has been treated a few times already, and pieces of cartillage 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 duscussed it with Dr. Chu and he said I would be crazy to 'mutelize' the ear like that. He said the cartillage 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. I already tried Elidel cream and diclofenac cream with no effect. He says not to use the steroid cream at all, ever, as the risk is too high it will stir up the 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 gynacology 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 then rice or gluten free products... The right cheek is a bit more red then the left, which is normal for me, but the inflamened 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.

Adding:

• Also, I was very flattered when the secretary of dr. Chu thought I was 16 (as she said though... might be a bit too flattering to be real). She couldn't believe I am already 31 (since 6 days actually). So I thought about that on the way home, and it is true I always have to inform people that I am actually done with school/university already. I checked my face in the mirror at home, and I don't have a wrincle yet! Hardly a line by the eyes. I think this might be related to the following: With rosacea skin that is weakened by flushing and inflammation, the skin barrier gets thinned and becomes more sensitive. I know all about it, went from thick, healthy skin to paper thin, chronically red skin that couldn't tollerate anything anymore. I was so used to a soothing cream, that I tried everything out there, spend a vast sum on all promising creams and made matters worse. Then a derm literally ordered me to not use anything on in for 6 months. I almost fell out of my chair, my skin would get as dry as the Sahara I cried. But she was right, after many months of dry and tearing skin, it did calm down a bit, the flushing got a bit less and the skin texture a bit better (meds helped more later on). Because the skin barrier has gotten so thin, the ingredients from topicals will enter the skin and they have many irritating ingredients, even the most natural ones. The will iritate the skin even more. I haven't used a topical for 6 years now, and the burning and irritated upper skin have calmed down very, very much. Your skin can produce it own fats in time. They found in a very big Dutch research (from dermatological hospitals), that 90% of Dutch women actually age there skin much sooner then normal, by their use of moisturizers! For the secretary to say I looked 16, was perhaps a bit exagerated, , but I have no wrincles, and baby cheeks still, whereas some girlfriends with fancy creams are having wrincles already. I blame this partly on the moisturizers! So, for people with irritated and burning rosacea skin, perhaps try to calm the skin by using nothing, just wash it at night with bottled water, no soaps, no creams,. no oils. And try to calm the rosacea down with medication or other treatment options, I would advice you.