Replies to This Discussion

Permalink Reply by illustr8r on September 17, 2017 at 2:44am

Were you diagnosed with Lichen Planopillaris? Have you lost your eyebrows? That was my diagnosis-with mild to moderate fibrosing. The hair loss pattern matched that of FFA. My Derm never said it would remain mild to moderate or that it would stop. I was a "fascinating case." Well, great.

All the best to you. :)

Permalink Reply by Mags27 on September 17, 2017 at 4:35am

Thanks - I was only diagnosed with FFA and I've lost most of my eyebrows and all the hair from my arms.

Permalink Reply by KarenGinny - Iowa, US on September 20, 2017 at 1:56pm

I've been diagnosed with FFA and also Lichen planopillaris. I've had this for at least 5 years now. I am taking methotrexate to help with inflammation. I've lost a lot of hair on my scalp but still have my eyebrows - although they are thinner. I still have most of my arm and leg hair except for a bare patch on one arm. Mine seems to have stopped for now, hopefully it's run it's course, but it's still pretty bad as it is.  If they say yours isn't "aggressive" I would think that is a good thing. They may mean you're not losing it very fast.

Permalink Reply by Halfbakedwho on September 20, 2017 at 4:29pm

Hi to you,
It took me a long time to notice my hair loss, and I wasn't the one who noticed it - it was a lady giving me a pedicure who did! I actually didn't think much of it and thought my hair would grow back. I didn't start thinking about it seriously until this past Spring, two years after the famous pedicure.

To me it's not subtle - and when I lift my hair up and show people - they say "Oh, okay" - but they don't notice unless I show them specifically (for now).

I have noticed that my alopecia is seeming to stop and start - it seemed to slow down (to me) in the summer, and now with the stress of the fall is accelerating. But it's very hard to tell - I took pictures - but I'm not in the mood to look at them.

Take good care,

Permalink Reply by Donna on October 7, 2017 at 8:03pm

I as just diagnosed yesterday with FFA. I wish I had gone to a dermatologist sooner. Like you it’s not that noticeable until I lift my hair. Then it’s bad. I used to have bangs but I’m letting them grow out to cover the sides better for now. the doctor is treating me with an corticosteroid for a few weeks then I go back. If it isn’t working she said she might try injections. I’m so scared as how fair back my hair loss will go.

Permalink Reply by Halfbakedwho on October 8, 2017 at 2:12am

Hey Donna, big hug to you. I too was such a mess when I discovered (on my own, through I picture I sent to a hair clinic online) that I have FFA. The medicines will slow it down. I was diagnosed this past Spring but have been losing hair since 2015- somehow I just thought it would grow back (a stressful time for me). It wasn't until I saw someone with "my old hair" that I took action, only from vanity, thinking some clinic would bring it back (they can in many cases, just not ours!). I was devastated to be diagnosed online, then having to wait to see a specialist, since my general doctor was pretty useless. But by the time the specialist confirmed it, I had already accepted it better. Some days I am still a mess, or at least some moments of some days. But then, I will look up solutions to conceal it online, should it come to that, and I'm comforted. Don't get too freaked out. Or, let's say that you will anyway, but for me, looking at options to cover it up gave me a lot of comfort and hope should it come to that. Look into taking better care of your stress level and diet. Lots of thoughts on that in this forum! Keep in touch. Hugs again to you.