Cellcept for FFA

I was diagnosed two years ago, but that was at least two years after my symptoms began with loss of all body hair, including eyebrows and eye lashes.  Both lashes and brows have come back, although they are sparse.   I tried the steroid injections in my scalp for six months,  but they didn't work. I also use Clobetasol Propionate Topical Solution twice daily.  I was prescribed Cellcept two months ago.  I had delayed taking it in hope that the other would work.  I have seen no improvement but the dermatologist said it would take at least three months to take effect.  Like others on this discussion forum, the burning and itching are almost my undoing.  In addition, I have started losing hair all over my head, not just around my face.  I leave a sink of hair every time I blow my hair dry and I fear I will be bald soon. 

Any suggestions for additional remedies would be most appreciated. 

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Replies to This Discussion

Permalink Reply by NatalieW on January 3, 2015 at 11:05pm
Hi, I feel your pain about having to wait so long to see if a treatment works! It feels like I lose a lot of hair in the 3 or 4 months that the Derm is trying to monitor an effect. But... I guess that's the nature of this disease. I have never learnt so much (or cared so much)about the hair growth cycle as I do now!i started Doxycyline 3 months ago so not sure whether it is working yet. My itching hadn't been as bad in the past few weeks but I have 2 new areas of tenderness at the back of my head which I'm concerned will lead to new areas of hair loss. Some others in the group are using Cellcept so I'm sure they will be helpful about that. The only thing i would add is that eating a gluten free diet significantly reduces my itching and redness on the front of my scalp. I have had PRP injections done once (google it if you like). I wish all the best for you, Natalie
Permalink Reply by TexasCruiser on January 4, 2015 at 8:11am

Thanks, Natalie, for the gluten free diet recommendation.  I will start that immediately.  Every time I go to the doctor (at a teaching hospital), they run the medical students to view my problem.  The doctor stated that FFA is very rare and the students need to see how it presents in order to recognize it.  I had been going to another doctor for nearly two years before she finally determined, after I had lost most of the hair around my face, that I had FFA. 

I hope the Doxycyline works for you.

Permalink Reply by NatalieW on January 4, 2015 at 1:13pm
The other things that were recently recommended by a cosmetic Dr were using a dermal roller and getting a small red UV light. I will try those in the next month. I figure I will throw everything at it early on

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