Acutane

After someone posted a study on the effectiveness of Acutane on FFA I spoke with my Derm who wrote me a script for it.  Is anyone using it currently? if yes what dosage and have you seen any improvement or stalling of disease progress?

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Replies to This Discussion

Permalink Reply by Anne Louise on January 24, 2018 at 8:07pm

I finally contacted my derm after meaning to do so for months and he has agreed it is worth trying Accutane. I have an appointment for 2/20 to begin the process. Looks like there is blood work to be done to monitor the liver. And no alcohol while taking Accutane? How will I cope without my wine?! But it's been a few years since I've done any systemic medications and I think it's worth a try; the study looked to be the only promising treatment from research I have read. Would love to hear other's thoughts/experience with Accutane.

Permalink Reply by mc on January 27, 2018 at 9:55am

Hi.  I brought that article to my dermatologist at Mass General and they were very skeptical about using Acutane.  In fact they enrolled me in a study being done at MGH and Brigham and Women Hospital for FFA.  They are suspecting this to be associated with topical things we have used on our skin.  

I went through the patch testing a couple of weeks ago where they tested over 100 different chemicals on my back over a three day period. The finding was consistent with other FFA patch testing: A reaction to frangrance.  

Im hoping they keep me informed of any new findings and now have switched to fragrance free products approved by Environmental Working Group.  I also stopped using daily chemical sunscreen ( which I used daily for over 20 years).  

Thank  God for Jamilla in Portsmouth NH for doing my eyebrows!!  I will commit I have any news!  

Permalink Reply by Anne Louise on January 27, 2018 at 12:03pm

Interesting. My derm reaches out to Lynne Goldberg at Boston Medical Center, they used to work together. I'm curious to hear her opinion. She is the director of the hair clinic there and also runs the Boston cicatricial support group

Permalink Reply by mc on January 27, 2018 at 1:28pm

I've seen her.  Gave me no help but told me to join support group.  In fact it was her that diagnosed my FFA condition over 6 years ago.  So discouraged.

Permalink Reply by Plf on February 11, 2018 at 11:12pm

Hi anne Louise, good luck with the Accutane, I am waiting to talk to a pharmacist about Accutane, hope it works for you...FFA be gone, or at least halt, take care

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