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Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies 0 Likes
Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue
Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies 4 Likes
Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue
Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply 0 Likes
Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue
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KarenGinny. My derm diagnosed me with FFA and LPP. She didnt do a biopsy because she said the scarring was so evident. I too had a bad reaction on my first try at a generic for plaquenil. When i saw a new lupus specialist he told me to try another brand. I had my pharmacy order the real drug and ive never had a problem with it.
Hi all, just wanted to comment on a couple of your comments. C, I also read the study that said that Plaquenil works best in the first 6 months, but I've also read articles (including one in the last CARF newsletter) that say it can take 9-10 months to see visible results. I've been taking it for almost 9 months and the redness has definitely subsided. I also think the hairloss may not be quite as bad. I still have pain, especially when the wind blows, but it's better. I think Plaquenil works so gradually that you barely notice it.
Mandy, my experience with pain is very much like yours. It seems like it got much worse after my diagnosis. Do you think it's the topical? I stopped using mine last summer, but had to start using it again when I had a flareup.
Hi Celia - a few months ago I found and read the article you were quoting from. It seems to say that if Hydroxy doesn't work within 6 months there's no point staying on it and that was what my dermatologist told me last time I saw her (just before she said there was basically no point in me seeing her again!).
I hate to sound negative but it looks to me as if at the moment none of the doctors anywhere know of any medication that will stop FFA. I've stopped using any medication except for Dermovate (clobetasol lotion) which I only use occasionally now. My hair is still disappearing and there seems to be nothing I can do except just accept it as a fact of life.
Let's hope that eventually a cure will be found - if not for us then at least for our daughters and granddaughters.
By the way - are men never affected by FFA or only rarely? I kind of assumed that all the members of this support group are ladies. Am I wrong about that?
Celia and Brenda, I am currently taking Methotrexate 3 pills 2 times a day, once a week. I've been on it about a month and do notice my scalp is a little less itchy, but may not see real results for a while. My current derm did a biopsy and thinks I have LPP instead of FFA like my 1st derm said, but it's all very similar I believe, and most of my hair loss is in the front hairline. I had tried the plaquenil but had to stop when it gave me a rash.
C: I declined methotrexate last november because i catch every virus and bug that goes around. I dont need my immune system suppressed. Plus i had a very bad reaction to imuran another immunosuppresant. But i may decide to try the methotrexate. My hair loss is more noticeable by the day.
Marian i have taken plaquenil for almost three years now for lupus. I first noticed my hair loss in Nov. 2010. I was diagnosed with lupus in March 2011. Plaquenil has helped my lupus but hasnt had any effect on my FFA. I'm on all the medications you are on with no improvement. My dermatologist asked me if i wanted methotrexate but i declined it last november. I see her next week and i might give it a try. Im still looking at wigs but havent made any decision yet.
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