frontal fibosing alopecia

HI I have fibrosing alopecia, I waa just told december 2012. I am confused, distressed please if anyone can let me know if they have had any treatments for this disease, and if so have they had any improvements.
I live in toronto Canada.

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Replies to This Discussion

Permalink Reply by Celia on July 7, 2013 at 2:47am

Hi Veronica. How are you getting on ? Haven't heard from you for a while. Hope you are OK X

Permalink Reply by dee on July 8, 2013 at 1:31pm

A plea for information here and advice. I've been prescribed Azathioprine, oral steroids, in addition to the Hydroxychloroquine and the Synalar steroid gel and Iron supplements that I have been taking without any improvement for 6 months. Reading the leaflet about the oral steroids is so scary. Anyone else been prescribed this treatment. I don't know what to do.

Permalink Reply by dee on July 9, 2013 at 4:46pm

Thanks for your reply Rebecca. Nothing very positive in your experience so far and lots of negatives. Gaining weight and losing hair - its most women's nightmare. I wish I had confidence in the doctor who is treating me. He seemed to suggest that I could stop the weight gain with sensible eating and exercise ! What dose are you on and is it Azathioprine.My family are very much against me taking the steroids. I think we all acknowledge that we are scared not to try treatments just in case....

Permalink Reply by Debs on July 10, 2013 at 4:36am
Rebecca, I think you must do whatever you feel might get the FFA under control at this stage of your hair loss. your experience of this condition sounds very unpleasant from the posts you have name to the group before. I hope you have success with this steroid. Xx
Permalink Reply by dee on July 12, 2013 at 3:56pm

I've collected my prescription but can't bring myself to take a first dose. I wish someone would post about something that works but I suppose if the condition is under control then the urge to post is less. I wish someone could advise me.

Permalink Reply by PamW San Diego, CA, USA on July 12, 2013 at 4:06pm
Hi, Dee. I can tell that you are very distressed. I don't know about the meds that you are taking, but I do know that the hydroxychloroquine is the standard treatment and that it can take as long as 6 months to work. I know that it seems like a long time, and it is hard to wait, but most of us who have been on the drug do experience a slow down in hair loss and stabilization. It will never go away, which is very difficult to accept. Good luck and keep busy.

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