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Thread: Accutane and the Development of Severe Flushing

  1. #1
    Senior Member banshee's Avatar
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    Default Accutane and the Development of Severe Flushing

    Hi-

    I'm just taking a bit of a survey to see how many folks who took Accutane went on to develop severe flushing.

    I took it back when high dose was the norm, a 40/60mg a day regime for 4 months.

    I was initially diagnosed with pre-Rosacea at 19, presenting the classic symptoms. At 25, I developed full blown, debilitating Erythrotelangiectatic Neuropathic Rosacea about 2 years after Accutane. Not a lot of outward redness or any P&P's at that time, so doctors were reluctant to ascribe my intense flushing to the Rosacea. It seemed like my deepest vascular layers were severely damaged from the inside out while outwardly I remained relatively "normal" looking.

    I feel at low dose Accutane can be helpful to Rosacea. I'm forced to reconsider it, but I wondered if the higher dose led to the severity of my condition.

    Thanks for sharing any experiences-
    Kristen
    Last edited by banshee; 20th April 2010 at 10:20 PM.
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    Hi Kristen,
    You can count me in the group that developed severe flushing while taking Accutane. My flushing got even worse after I stopped, but clearly started while on the Accutane. In my case, I now believe it somehow damaged my autonomic nervous system, since testing has proven that I stopped sweating over 90% of my body, in addition to the severe flushing. And, as you also probably know, my flushing is extremely painful, much like erythromelalgia (EM) and I am considered legally disabled by it.

    I guess it's too late to gather folks and start a class action suit? But I think there are many of us with this issue. I did report my problem to Roche, but they acted like I was alone.

    Take care,
    Meg

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    Senior Member banshee's Avatar
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    Meg-

    Good to hear from you....I was debilitated by the flushing at one point, so it always breaks my heart to hear of your condition.

    I had the perfect storm of factors come together, so I can't blame the Accutane per se. I had signs this type of flushing existed in me before I took it, but I have little doubt it added gallons of lighter fluid to the situation. I can only guess it seems at optimal dose to tamp down blood vessel inflammation, and makes possibly faulty innervation around blood vessels in Rosacea constrict tighter...but in excess does the opposite. I would have been put on an even higher dose, but argued against it. It's so unfortunate that things meant to help can be used improperly. I feel my dermatologist should have been aware of the detrimental effects high dose Accutane could have on my condition. The same happened with Paxil.

    If only I could offer something to ease your suffering, but you have my continued hope you find relief.

    best wishes-
    Kristen
    Last edited by banshee; 21st April 2010 at 11:30 AM.
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    homemade moisturizer w/dimethicone
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    Thera Tears supplement & PF gel drops

    "Mornie utķliŽ (darkness has come)..Believe and you will find your way.
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    I take a low dose of accutane, averaging 5mg per day. At that level it does not cause flushing problems for me. If I increase my dose to 10mg per day it does cause flushing problems. I think everyone responds in a different manner.

    -Dave-

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    Senior Member Michael_V's Avatar
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    I am only a month into my low dose (10 mg/d) Accutane therapy, but so far it has improved every aspect of my disease, including flushing and burning, by at least 90%.

    Other things I have tried include remeron, clonidine, rifaximin, metronidazole, minocin, doryx, oracea, ivermectin, eurax, permethrine, IPL, and RLT.

    Nothing else even comes close. Now I'm using only Accutane and Remeron and plan to taper off the Remeron soon.

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    What do you think of Remeron? That is great too about Accutane and most of your symptoms going away!
    Doug

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    Senior Member banshee's Avatar
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    Appreciate you weighing in Michael and flying_er...

    Especially glad to hear it's helping you so much Michael.

    I think I would have had good results too had I taken low dose. But as to a second time around- Accutane doesn't feel like the right choice for me. I believe it dried up more than my skin, and one time of high dose is enough stress on my body.

    mrsmoof-there's quite a few threads on Remeron. Just do a search and it should give you plenty of accounts.
    My weapons :

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    Modified OCM using; microfiber cloth, jojoba/safflower oil, & cool water
    Everyday Minerals
    Bare Minerals Primetime
    Linda Sy Oatmeal & Goodskin All Calm Cleanser
    Replenix Green Tea Serum
    homemade moisturizer w/dimethicone
    Ester C, NSI brand SOD
    Thera Tears supplement & PF gel drops

    "Mornie utķliŽ (darkness has come)..Believe and you will find your way.
    Mornie alantiŽ (darkness has fallen)..A promise lives within you now."

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    Senior Member bluesky's Avatar
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    I don't really see how accutane even low dose can improve "all aspects" of rosacea, expecialy flushing, as I think even at 10 mgs daily accutane might make my flushing slightly worse but then again I can't really say as it's been so long that I've been on it at this point, plus my flushing is atleast 10x better now than it was this time last year but that is due to remeron and clonodine.

    Accutane for it's actual purpose though- clearing skin of acne, pustules, has been VERY effective for me. My face is less red but then again I have to say thats much more likely from greatly reduced flushing from clonodine and remeron. Overall though I do recommend accutane at low dose if you have really bad pustules and acne with your rosacea, but do not recommend accutane whatsoever if you have strictly flushing and vascular rosacea as it did not help me at all in that aspect and actually made me more flush prone.

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    I am interested in remeron and clonodine.
    Doug

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    Senior Member Michael_V's Avatar
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    I tried remeron and clonidine without effect. Of course, your mileage may vary!

    I posted this somewhere else, but here is one study that discusses global improvement in symptoms with low dose Accutane: http://web.archive.org/web/200302011...lt0798-10.html

    Pertinent excerpts:

    "The most rapid response to treatment was for pustular lesions.... There was a significant decline in erythema at the ninth week when compared with the initial values, and at the end of the study compared with the ninth week.... Telangiectasia scores significantly decreased by the ninth week of treatment, showing a further significant decline at the end of the study.... Three patients had rhinophyma ... their total scores regressed from 8 to 4 with treatment.... For the subjective symptoms, a burning sensation reported by 18 patients at the beginning of the study completely diminished by the sixth week of treatment.... In our small group, using a daily dose of 10 mg of isotretinoin, we did not observe [any] adverse effects. "

    To that I will add that I have been taking Accutane for a month today and have seen a ninety percent reduction in every symptom. Most days now I actually forget that I even have rosacea, whereas before the constant burning and pressure continually reminded me ... not to mention any glances in a mirror!

    Now my face is pale, smooth, and cool. Ladies are smiling at me again.

    The day I started Accutane I stopped taking clonidine and all oral and topical antibiotics. Now I just use a light moisturizer. I plan to taper and then discontinue the Remeron over the next month.

    I unequivocally love Accutane. It has given me my life back.

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