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mdo00 Message
11 Dec 2010, 05:49 AM

Has anyone tried using Accutane? It's the only thing that my dermatologist has said that would show real improvement.
belle Message
12 Dec 2010, 04:39 PM

yes i was on it for a year then went off. My skin improved a lot when I first started taking it then there was not much improvement so I went off it. It varies with each person hope this helps
theyson Message
12 Dec 2010, 08:20 PM

My daughter (18 years old) took it for 6 months, went off for 6 months, then went back on August at a lower dosage(20mg every other day). It definitely helps a lot at a higher dosage(30+mg/day) but at a lower dose it just helps a little. We're also going to try photodynamic(light) therapy in 2 weeks which I hope will have good results.
Charlene Message
17 Dec 2010, 04:51 AM

I was the "guinea pig" for Accutane a longggg time ago. The dermatologists did a protocol bit. The doses were the highest they could possibly give(175mg) and the side effects were hideous. The first two weeks were the worst. Every underlying "unborn" pimple or clogged hair follicle came to the surface. Not to be graphic;but, a bad pizza looked better than my face and the pain was horrid. I lost 15 pounds in one week and the muscle pain and dry lips(bleeding) were not fun. I'm so glad they have cut down on the dosages; still, be aware that it can cause horrible birth defects if a pregnancy occurs while taking it. Some people have had fantastic results with Accutane, Tegason and Acetretin, I, however, didn't. Good luck.
jasondilly Message
17 Dec 2010, 02:47 PM

I personally have not taken Accutane, but my mother was on it for many years. For those who are considering Accutane, there is primarily one thing to keep in mind. The use of Accutane can be summarized as follows: it is a short term solution to a long term problem. The medication works great while you are on it, but once removed, the skin lesions will tend to come back worse than ever before. This in turn means that in order to remain effective, you will have to remain on the medication indefinitely. This is cause of concern as there are numerous long-term side effects, as these medications are not developed for prolonged use. This has been the experience of my mother, which has subsequently caused me to shy away from the prospects of requesting Accutane. There was a dermatologist I saw who stated the same thing as referenced in this string. Accutane was his first initial recommendation, which I felt to be a bit extreme. I subsequently saw another derm who was a bit more acclimated to the disease. He did not recommend Accutane for the reasons I have described above, and instead has placed me on Minocycline, which is simply an antibiotic. The results have been only modest thus far. Bactriban has also worked for my mother in the past. Personally, I have found that using Dial soap, as well as a Hibiclens formula appears to be helping me out. I have also found previous success in using a Silver Sulfodiazine cream prescribed by my derm. One more bit of advice for those considering Accutane...please think long and hard prior to beginning this medication. I certainly understand the temptation, especially if your skin is extremely broken out. It works for most people, but ironically, the doctors have yet to determine why it works. It is not meant for long term use, and my mother had to be taken off of it for medical reasons after many years. In addition, the body can sometimes build a resistance to it, which then means a stronger form of retanoid is needed, usually Soriatane. There are some serious long term side effects of taking these medications for a long period, so I emplore you to think long and hard. As stated, I understand the temptation, as they do work, and have even considered requesting them myself on various occassions. I would get fed up with my skin being soo broken out, that I would think, "I don't care about the side effects in the long-term, I just want the results now." Each time however, I have talked myself out of it based upon my mothers prior experiences. She suffers more and more due to secondary infections. This is due to the fact that long term use of retinoids as well as antibiotics causes your body to build resistances. Her doctors are now having a terrible time finding an antibiotic that will work for her. Please continue to pray that we will eventually find a cure for this terrible disease. To all fellow sufferers, my heart is with you. I was diagnosed at age 14, and am now 28.
gg0505 Message
31 Jul 2011, 02:59 PM

I am on Accutane, called Roaccutane in England, and the results are fantastic, but my oh my do I know about it when I'm not taking it. I'm only on 20mg a day. I'm 26 and want to start a family really soon, and this means coming off Roaccutane. I'm hoping that perhaps people on here could recommend a safe alternative to looking after my skin whilst I'm (hopefully!) pregnant?
mario111111 Message
10 Dec 2011, 04:33 PM

Hello Everyone, Can you please join the Facebook page for Darier Disease.. The page is called : Darier's disease, let's know each other!!! and please Souleiman can you share your experience on facebook... Thanks a lot!!!
ChrisL Message
24 Apr 2012, 07:46 AM

I used Accutane about 20 years ago and while it did clear up my skin I suffered almost all of the potential side effects. I had yellowing of the skin, thinning of the hair, joint pain, and I suffered horrible nose bleeds as well. The other thing is that I am not able to be a blood donor now. In Canada it doesn't matter how long ago you took the drug, they put you on the do not donate list forever. That is a bit scary to me.