I saw my dermatologist this week to discuss trying Accutane. Boy I was not prepared for the hoops I have to jump through to start it! It is enough to give one pause. However my derm estimates he has prescribed it about 10,000 times since it came out in the 80s and he is comfortable with prescribing it. Interestingly, he would not prescribe Finasteride for me because of its side effects (nor am I interested anyway). The usual dose is around 60 mg, however the dose I would take, based on the FFA study, is 20 mg. I have not taken any systemic meds in a few years; I have had FFA for 5 years now.

Another fact I find interesting is that retinoid metabolism is altered in cicatricial alopecias. It seems to me that either too much or too little of Vitamin A can have some awful effects! I also saw my hairdresser this week and asked her if she knew of anyone who had used Accutane.  She knows of 3 people, and all experienced hair loss a month or two after they stopped taking Accutane. That, of course, is the last thing I need! My dermatologist made no mention of this side effect. 

I also have the facial papules that I hate almost as much as the hair loss. I have had great success with EpiduoForte, which is a topical cream that is applied VERY sparingly. It is Adapalene (DIfferin Gel) combined with Benzoyl Peroxide; my derm gave me some samples several months ago. I have found a noticeable improvement using this, so something to consider for those of you with the rough skin appearance of the facial papules.

So my question here is for those of you using Accutane. What do you think? Has it slowed the progression of your hair loss? I am back in a desperate phase (I have fluctuated over the years between acceptance and desperation...no middle ground for me, ha ha!) and am clinging to the hope Accutane will be my cure. So I am coming here to our wonderful forum for some objectivity. Please share your thoughts and experiences!

For those of you who have not seen the study on Accutane and FFA that came out last fall, here it is:

https://www.ncbi.nlm.nih.gov/pubmed/29036252

Also, here is the other study referenced on this site for Accutane treating the facial papules...only 3 women, but all cleared up with using Accutane.

https://www.researchgate.net/publication/315464733_Successful_Treat...

And finally, this study points to our altered retinoid metabolism:

https://www.ncbi.nlm.nih.gov/pubmed/23096705

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Replies to This Discussion

Thanks for all the information, that's great,  do you mind me asking when the facial papules developed? I was a little disconcerted that the dermatologist I went to just wrote me up a script for three products, she knew I was already on blood pressure medication and just said "oh you had better keep and eye on your blood pressure, as the spirilactone is also a blood pressure medication.  Other side effects were just glossed over..not thorough enough for a $260 consult!  Glad your having success with the Adapalene/ Benzoyl peroxide.. its nice to have a win occasionally.

I can't really say when the papules developed. I've had them for a few years, possibly as long as my FFA diagnosis. I thought at first it was aging skin but only in the past year or so did I learn that it is connected to this awful condition. I was sick with the flu last week and dropped all my usual skin care routines. I didn't appreciate the improvement with Epiduo Forte until I stopped using it! I'm getting back on track this week. I saw improvement in just a week after using the EF cream, and greater improvement after a month.

Hi Anne Louise,

I also read this research and will be taking Accutane to reduce unsightly skin papules (my hairline seems to be stable atm). Will start the course in 3 months’ time (in the Alps a lot and high UV, chapped skin issues will be exacerbated when taking retinoids). The dosage is less than for conditions like acne and so the side effects are, therefore, reduced. I’ll report back with the results. Please let us know how you get on. Thanks.

I have looked at a lot of reviews for Epiduo Gel. I found it was common for people to say that they experienced redness, itching and burning when using it. Also often said was that their acne got worse, but then got better after a couple weeks of usage. Most people said it helped their acne. It was rated as easy to use and not expensive compared to other treatments by many reviewers. I am using now Accutane as my dermatologist recommended and I am very happy with the results it brings.

Did you experience many side effects when using this medicine https://onlineapotheek.co/product/isotretinoine-roaccutane/? I am planning to start using it for my acne and pimples as well but the side effects keep holding me back.

Thanks for sharing this. I don't use Accutane but I might talk to my derm about it at my next visit. Interesting about EpiduoForte. I have been using a Benzoyl Peroxide face wash (Pan Oxyl) along with Differin Gel for several months now and the texture of my skin has improved. I started using both to treat adult acne and the unintended side effect is that it helped reduce the rough texture from FFA.

 Sorry about this very late response because I'm new.  I took Accutane last October for the facial papules on my chin. They were misdiagnosed by a Derm , here in the US  as sebaceous hyperplasia. I know what they were now. Anyway, I took 40 mg a day for three months and they disappeared. The protocol in the US was so awful that I went to Spain ,where my family lives, and bought the whole three month supply at one time. My blood work didn't change and all I had as a side effect were dry lips  

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