Long Term Accutane Experience from Rick

Written by on November 21, 2006 in Accutane and Roaccutane with 12 Comments

Thanks to Rick for continuing to share his experiences in taking accutane long term at low dosage. We really appreciate you continuing to keep us up to date with how accutane is helping you treat your rosacea. It is only through these sort of detailed reports that we can all learn how best to use the available treatments.

As Rick mentions in his most recent message, he first posted some encouraging comments 5 years ago – `Rosacea: dramatic results with low dose accutane‘. Now he has posted a new message to the group – `An update โ€“ 5+ years on low-dose accutane‘.

Rick decided to experiment and stop taking accutane this year. His ongoing dose was two 20mg tablets per week. His rosacea symptoms returned after 4 months. After again returning to taking accutane, the same dramatic effect he felt 5 years ago returned.

Some extracts ;

From: rdl000@_.com
Date: Fri, 17 Nov 2006 01:14:00 -0000
Subject: [rosacea] An update โ€“ 5+ years on low-dose accutane

On July 1 this year, I decided to stop accutane completely, just to see if there was any persistent effect. I also started taking a multi-vitamin daily, with standard Vitamin A dosage (which is orders of magnitude lower in retinol than isotretinoin).

For a couple of months, everything was going quite well, and I was about to post here that *possibly* Vitamin A, in conventional doses, could act as a surrogate for accutane in terms of its anti-inflammatory effect.

However, after 4 months of being off accutane, the redness and even some p&p (for first time) came with vengeance. So, on November 1, resumed accutane, taking 4 20 mg tabs over first 7 days. The improvement was (once again) dramatic, and with very high confidence, I believe this could not be observed in any random 1 week period. In other words, it is significant. It is quite reminiscent of what I reported 5 years ago.

In my view, this cannot be due to the recognized reduction in seb gland activity. There is some inexplicable anti-inflammatory effect that kicks in almost immediately. I suspect I will lose a little bit of the impact again over time, but I am now convinced that (a) it works and (b) if I stop it, I lose the impact. I may need to take it forever.

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About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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12 Reader Comments

  1. jo says:

    hello? i am going to the derm on Thursday and begg him for accutane. I have rosacea bad and cant take it anymore!!! I also have a very very oily face ( hoping accutane takes care of this even if he only gives me a low dose) and some huge painful pimples … needless to say I am not very attractive!!!!! If I could hide my life away in a paper bag I would.

    Please hope for me that he gives me accutane.

    Jody

  2. Patti says:

    Hi, I am a 49 year old female. I have been diagnosed with acne rosacea for about a year. I have pretty much gone into seclusion since. I look horrible. I can deal with redness, but these pimples are pretty bad. My face does not ever feel smooth anymore. My face always have these small bumps just under the surface . Then some of them become big and red. The worse part is when I rake my nails down my face these little hard kernels pop out of my pores. The only thing my doc has given me is tetrycycline and I have taken that till I think I am immune to it. And it never really worked all that well. I have tried the metrogel, which sometimes helps but not enough. I have even tried putting permethrin cream on my face and it does help alot . But no matter what I use, I notice that one day my face appears better and then the next day its on fire with pimples, greasiness, pores full of some gunk. It is so depressing! Has anyone had as much troubles as I have?
    I was wondering about this accutane that you write about. Do you take 4- 20mg tabs everyday? or just for the first 7 days? After the first 7 days, how many do you take a day? Could someone please email me?

    • Melissa says:

      I have acne rosacea and struggle with everything you have mentioned and Im only 26 ๐Ÿ™ talk about torture. I have noticed that salcylic acid (lotion or serum) helps me a lot with clogged pores and inflamation. Its not a cure all but I do notice improvement and less oil if I wear it under my makeup during the day. I also dont get those painful pimples under the surface as often. Be careful not to overdo it because you might get dryness and flaking, which happens to ignite my rosacea. . Another thing you might want to try is tretinoin or adapalene. I use tretinoin every other day cause thats all I can handle. Started Soolantra 2 months ago but havent noticed any improvement :/

  3. Torrey says:

    Hello,
    I am a 40 year old female who has been taking low dose accutane for four years now. I can not begin to express the difference it has made in my life. I have an awful (extreme) case of rosacea and seb. derm. Before I began this treatment, I contemplated suicide. Now, it never even crosses my mind. I am extremely grateful to the doctors and the makers of accutane… it saved my life. I take 20mg every other day and can sometimes go down to 10 mg every other day.

    I wish you success too! Torrey

  4. Kristine says:

    I have tried everything for the past 16 years. Accutane has been a lifesaver. The difference is night and day. My skin is clear, even, the scars are fading, and redness is reduced. I went to the same dermatologist for 14 years – after trying everything, I asked about Accutane. He said he would not prescribe it because I was of “child bearing age” and “it’s too much paperwork”. I decided to take my health and future in to my own hands and I found a new dermatologist that listened to my ideas and also my agony. I did the full treatment (up to 120mg daily) for 5 months and a lowdose (20mg every other day) for the past 2 years. My point, if your dermatologist is not listening to you– find one that will. I wish I had done this 16 years ago. Good Luck to you!

  5. Will says:

    Hi guys,

    Thanks for sharing your experience with low dose accutane over the long term. Its great to hear you have had good experiences.

    I am about to start low dose long term accutane for persistent acne. It seems to be the only thing that keeps me clear.

    I was hoping to ask your advice? I worry a little about taking accutane long term – even a low dose. Has anyone found any side effects with their bones or joints? I know this can happen with higher doses and does not resolve once accutane is stop.

    Have any of you guys had this? Your advice would be really great. It seems positive though if you guys have been taking them for several years? I think I am prepared to take the risk due to the psychological impack bad skin has on me!

  6. samodeo says:

    I have had what most derms blow off as acne. I took a course of accutane up to 60mg per day for 5 months last year. Worked like a charm and didn’t see any more p&p’s for about a year. Then, slowly the bastards came back. I can control the redness and p&p’s until my period then it is back to square one. 3 weeks clearing, 1 week breaking out. Very strange to me. I have left over accutane from my prescription last year, but I don’t really want to take it again. I have started hormonal therapy (ortho-tri-cyclen and spiro) given to me by my gyn. PCOS has been ruled out.

    I am convinced that demodex is at the heart of many rosacea and rosacea like symptoms. Accutane reduces sebum production within a week. Those little buggers live in and off of your sebum. No food=No demodex=Less inflammation. I covered my bed and pillows with allergen protectors, switched to tea tree shampoo and conditioner, and put 100% TTO on my face every night (along with a really good moisturizer). I don’t have the sneezing/trouble breathing in the morning, my hair looks and feels great. The scalp is no longer shedding, and my skin feels a lot better. No more wiggling, tingling, or itching.

    I am not sure of this connection, but just tossing the idea out there. It makes sense to me and is working.

  7. Sd says:

    Interesting comments about the demodex mite being related to rosacea. Even this link i checked out says there is some evidence showing a possible connection. http://en.wikipedia.org/wiki/Demodex_mite

    I’ll have to investigate this more…..

  8. David Pascoe says:

    Hi SD,

    I have collected what I think is the best available news and research on demodex mites here (currently I have 12 items).

    http://rosacea-support.org/articles/demodex-mites

    I remain skeptical about the link between rosacea and demodex mites. Nonetheless this page is one of the most popular on this blog – you might find it interesting ;

    http://rosacea-support.org/demodex-mites-treatment

    all the best,
    davidp.

  9. Giuliano Lovadina says:

    I would normally only read the comments, but since accutane has helped me so much i have decided to comment myself. i am on a 60 mg daily dose and i only have dry lips , dry skin , and sensitivity to sunlight. this is my 2nd time taking the drug. the first time was 3 years ago and i took the drug for 6 months and at the end of the trial my skin was perfect. the reason i am back on it again is because i started breaking out really bad due to a 1 year excursion in AFRICA………GOOD LUCK… Its a miracle drug.. because if i had to have acne like this i for the rest of my life i would become a hermit!!!

  10. Hector says:

    Iยดm 26 and a have body acne since i was 14. I dont know what kept me away from suicide, maybe the hope that someday acne would fade away… that didnt happen even after 3 isotretinoins treatments (20mg x day for 5 months) . But now my life has changed since i discovered the ultra low dose, im taking one 20mg pill every week (4 per month) and its enough! I started a year ago, im plannin to use it for 2 more years and see what happens, if acne comes back, im gonna use it forever, even if it kills me i really dont care, my life with acne was so sad!

  11. Paul says:

    I’m 39 and rosacea crept up on me back in 2009. It has been tough, because I went from being ougoing and proud of my appearance to basically becoming a hermit that doesn’t want to go out in public.

    I had no idea what rosacea was back in 2009 and didn’t take it seriously enough until the P&P start to develop in 2010 and then it exploded into severe rosacea. In 2011, the dermatologist put me on Minocin (Minocycline), however, it had little to no effect. I have been on Accutane 40mg per day since May 2012 and there has some, but little improvement. The one thing I can say is that I have experienced clear skin for roughly 1-2 days at a time, but the rosacea always seems to come back in full force for the next 1-2 weeks. It is very frustrating. I have been monitoring my eating habits and it’s not easy, because the rosacea always creeps up at unexpected times.

    In addition to the Accutane, I have also been using some natural products (supplements) with hopes that the combined effect will eliminate my rosacea or at least control it so that my skin will one day clear up.

    I appreciate reading your posts and it encourages me to continue hoping that I may also relieved of this godforsaken condition one of these days. Hopefully I will be back with some positive news!

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