I've had FFA for quite some time..  However my main symptom was my horrible facial papules.  Just woke up with a face full one day.  My doctor was baffled.  Had me go through a series of tests just to find out that nothing was wrong.  Went to several dermatologists who were convinced I had "sun damage"  I had never seen sun damage look this way.  I tried every cream in the book.  Even tried CO2 laser.  ( I don't recommend this!!  Hurts like hell!)  And it seemed to just get worse!

Then miraculously, I stumbled across a dermatologist who took interest in my condition.  Read the biopsies that had been done and told me I had FFA.  How can that be?  I still had my hair.  Granted it had been thinning in the past few years.  But I chucked it up to pre-menopause.  I then read as much as I could and found the study that isotretinoin had cleared up papules in many patients.  

I have been taking isotretinoin in conjunction with Hydroxychloroquine. We started with 20mg of the isotretinoin and have increased it to 35 and 40 mg this past month.  95% of the papules are gone.  I'm over the moon happy with the results.  This has changed my outlook on life.  

But now it's time to get off of this medicine.  It's definitely causing some bad side effects.  I've experienced the usual dry skin, lips and nose.  But the worse part is the joint pain I now have.  It is taking a toll and I need to stop taking it.  I'm just so afraid the papules will return once I'm off the medication.  I can't find anything on line talking about what happens once you stop taking the isotretinoin.  

Please let me know if you've taken it?  And if you are still papule-free after stopping it?