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Thread: Just had the condensed protocol with Dr Darm -- Help

  1. #21
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    OOPS - I just posted this on another thread.

    If you can't do Elidil (and I can't post IPL or not - it always flares me) Protopic can be a good alternative.

    You still have to rub it on though, and if you are flaring a lot that can be a problem.

    Post IPL I would get the Evian spray on water (you can get it at Sephora) and mist my face good then put on the Protopic.
    Cools the face a bit and keeps you from having to rub so hard to apply the topical.

    I actually used Protopic after every treatment with Dr. Darm (because I use it every nite anyway) and skipped it the day before the next treatment to make myself more "flare-y".


    I hope this - or something - helps.

    You sound pretty uncomfortable.

  2. #22
    Senior Member IowaDavid's Avatar
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    I feel the need to reaffirm that using low-level red light therapy post-thermal laser treatment is probably the best help I've found for bouncing back from aggressive/normal laser treatment side-effects. There is no topical irriation, and you don't have to take any pharmaceuticals.

    That's not to say I'm off clonidine or klonopin or benadryl--but red light therapy is the best, most consistent (and that's for post-laser healing and normal rosacea-treatment), modality I've found so far.

    Unfortunately, I don't have any studies to support my anecdotal experience. However, until we have our silver-bullet topical or laser system, I am very glad I have my red light system pushing back my symptoms every day while I wait for better, cheaper, modalities.


    David
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  3. #23
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    After a bad IPL treatment january last year I almost didn't stop flushing for a year! What has helped me breaking the cycle so far is an antidepressant called Remeron (mirtizapine) and low dose propranolol on top of my normal dose of moxonidine. Now I don't need my fan 24/7 anymore, which helps breaking the flushing cycle as well probably. You might consider giving this a chance as well if things don't calm down soon/ after another while?

    In the last year I have tried many medication to break the inflammatory/ flushing cycle, without succes: antibiotics, anti-inflammatories (NSAID's etc.), Elidel etc..

  4. #24
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    Day 33 -- I'm a little frustrated and annoyed with the progress so far. My trigger sensativity since the treatments has improved, but it has been gradual and marginal at best. I'm still much more senative then I was prior to the treatments.

    Day time flushing, absent an obvious trigger, has not been a big problem lately, but I'm on a clonidine patch. The real test will be how I flush once Iget off the clonidine. I hope I don't have to be on these meds, because I din't need them prior to the treatments.

    Darm had me on about a week and a half of topical steroids, and frankly their a bitch to get off. The rebound is significant. I had to cut down on the topical steroid quickly (Nutracort lotion), because in the base was aggravating my skin. Sounds counterintuitive, but that was my impression. Now I'm back on a cream based topical steroid of the same strength, and I'll see if I can ween myself off this a little more slowly.

    My main problem, which I did not have prior to the treatments, continues to be these waking night flushes. Very strange. They result in a lot of sleep deficit, so were working on that problem too. I hoping with enough sleep and time they will just go away, because it is very debilitating.

    At this point, I regret the trreatments, but am hoping thisgs will get better.

  5. #25
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    Quote Originally Posted by SteveYork
    My main problem, which I did not have prior to the treatments, continues to be these waking night flushes. Very strange. They result in a lot of sleep deficit, so were working on that problem too. I hoping with enough sleep and time they will just go away, because it is very debilitating.

    At this point, I regret the trreatments, but am hoping thisgs will get better.
    Hey Steve,

    Sleep deprivation is a real bitch, especially when coupled with burning pain.

    Did you read Geoffrey's post about a new sleeping pill that is available and which could give you the much needed rest you deserve without risk of addiction? It's at: http://forum.rosaceagroup.org/viewtopic.php?t=2449

    I hope you find some relief soon Steve.

  6. #26
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    Yes, I did have the opportunity to read Geoffrey's informative post. It gave us somewhere to start. We are going to go down the list and try everything, but unfortunately everything I tried to date has caused flushing. This is somewhat suprising, because prior to the treaments, for example, I could use OTC sleeping pills with no problems, and now they cause a major flush.

    The only items which have not caused a flush so far are melotonin and 5-HTP, all OTC natural amini acids and stuff like that. But they are not as effective in getting me back to sleep after I've been wakened by one of these night flushes.

    I'm starting to think that at some point -- if this waking night flusing problem continues -- i will just have to use some strong sleep aid, even if it causes flushing, just so that I can put together some decent nights of sleep, because I believe that may be the best remedy to get rid of my nightly visitors.

  7. #27
    Senior Member IowaDavid's Avatar
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    If you're flushing in your sleep, some things that I have found helpful:

    Try a Chillow. It's nice to cool your head/neck.

    If you're single (or, if you have a very cooperative partner), building a "wedge" with some wood to slide under the head-end of your bed can help by letting you sleep on an incline so you don't have to deal with gravity working against you.

    Also, having a fan blowing across my torso/exposed legs (DON'T rely on fans on your face--that can really lead to problems through mechanical irritation. Bad News Bears. ;) ) helps cool my body in total and avoid a heat-flush response.

    Misting my face/head with purified water, when I feel a flush coming on, until my body settles down to its sleeping temperature.

    Also, clonidine if you haven't tried it.

    Best of luck ,

    David
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  8. #28
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    Hi Steve.

    I have also put this information in a pm, as a reply on your private question. Just for all others who are interested in this, I will repeat it here:

    Remeron (or mirtazipine, an antidepressant) is actually used often for insomnia. It makes you fall asleep fast and deep. It also significantly reduced flushing, during night and day. Like Mermaid wrote somewhere else: remeron not only reduces (hot)flushes, but also has strong antihistaminic actions. All normal antihistamines actually made me flush more in the past. That's how sensitive I am to everything!

    I would definitely give this drug a try if I were you. I'm so happy that I started using it. I still am a severe flusher, but don't flush 24/7 anymore and less extreme. It has cut my anxiety and depression down as well. Side-effects are drowsiness (I don't have that luckily), increased appetite and weight gain, vivid dreams. But I don't mind those, compared to how I was before I started it.

    Start with 15 mg, take it before going to bed. You will fall asleep from them if you take them during the day. Later you might up it to 30 mg.
    Everyone is free to ask me anything about it,

    Natalja

  9. #29
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    It turns out that many of the severe symptoms from which I was suffering, especially those terrible night flashes, were side effects of the high doses of prednisone which I was taking. This is unfortunate, because I took many medications post treatment to combat these symptoms (e.g., Elidel, topical steroids, clonidine patch, and, ironically, continued high doses of prednisone) which, in turn, had their own side effects or caused flares. As soon as I statrted cutting down on the prednisone in January, the symptoms largely decreased.

    Unfortunately, my rosacea -- now more then 10 weeks post treatment -- is worse then it was prior to the treatments. My face is generally more red then it was prior to treatment; I now get almost full face flushes when I flush, whereas before I would only flush in the upper part of my cheeks; I'm having terrible breakouts and occular rosacea which I haven't had to deal with in years; and for the last couple of weeks I've been getting headaches whenever I flush.

    And to top it all off, I'm battling chronic diarrhea, which I assume is from the long term prednisone and antibiotic use. I also perspire quite heavily in the armpits when I flush or am excited, and I'm hoping that is just a left over symptom form the prednisone use, as I also hope is my messed up sleep patterns.

    Darm stands behind his work, and has invited me back for more treatments, but for reasons of economy (I live in Florida), I'll see what can be done locally first.

    I'm really disappointed at the results of these treatments. I'm effectively disabled from my career as a trial litigator until the condition improves. I've been off the meds for about a month now, and the condition has actually deteriorated in that time. Accordingly, I don't hold much hope out that this condition will get better with time. This has just been a very bad experience.

    I'll update this if I get better with any future treatments or additional elapsed time.

  10. #30
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    "He stands behind his work" ~ will he treat you again at a reduced rate or even free of any charge?

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