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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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Hi Rebecca, this stemcell transplant, it is very new and experimental, I think they onlyperform it for about 2-3 years (at least on FFA patients)
I got my bloodresults back: iron, ferritin, B6 en B12 all OK except vitamine D was a little bit low, 67, but not very, my GP says it should be at least 75.
I also finally heard from de Hair Science Institute from dr Gho (hair stemcell transplants). They tell me that on 1 of every 10 treated FFA patients the new hair falls out in about 1-2 years. But they didn't say how many FFA patients they have treated.
I am still having doubts about whether or not to take the Cyclo and the test transplant though
I actually have low Ferritin levels, so no, I haven't experienced that! I've been taking liquid iron at lunch to boost them (at least when I remember to take it.) I can't take it in the morning or at night because I can't take with the minocycline.
Just got some more blood work back - ANA is negative. That's good news. My homocysteine and CRP levels were normal which indicate I don't have high inflammation. But I have very high Ferritin levels. Anybody else experience that?
Mycophenolate mofetil (MMF) is the pharmaceutical name for Cellcept. It isn't called Cellcept here in the UK.
Pam, I'm just so glad you're finally seeing a specialist about it. It seems you have had more itching and burning than anyone else, and that it has gone on way too long. I do hope they find that there is an allergen you can easily avoid from now on!
Hello all
I am writing to report on my visit yesterday with my dermatologist, Dr Aisha Ali in London. Let me first say that Dr Ali spent a long time just talking with me. She was entirely personable and concerned about the lack of attention paid to those suffering from this disease. I mentioned that I'd gone to the CARF conference in November and that I had met many women there who do not seem to fit the FFA profile. She thinks the profile (middle aged, middle class, well educated postmenopausal women) is inaccurate; she has seen many more types of patient than one would expect, including many men. She thinks this is a result of failure to seek treatment and in many cases misdiagnosis. She is passionate about getting the information our and has asked me to spread the word that she runs a hair clinic at Charing Cross Hospital on Tuesday mornings. Anyone living in England can ask for their GP for a referral to this clinic. She also has patients from Scotland and Northern Ireland but the referral may not be as straightforward. Dr Ali will also be working with Dr Christos on his DNA project. Finally Dr Ali said she treats every patient individually and does not prescribe the same drugs for everyone.
I have had FFA for a number of years. I was misdiagnosed for a number of years by London's top NHS dermatologist. Since the summer my hair loss has progressed and now I am experiencing itching and burning that are at times overwhelming. I had been taking hydroxycloroquine but Dr Ali has switched me to Cellcept, saying that this is the frontline treatment now. I am concerned about the side effects but she assures me that cyclosporin has more of an impact on the liver than cellcept. I will have to have my blood tested weekly at first then tapering off. The goal is to keep the hair loss at bay until the disease burns itself out. Dr Ali assures me that this does happen, and has happened to several of her patients.
yes it is very good isn't it Rebecca, which conditioner do you use?
I use Devacurl (but it's not for sale in Europe, or it was.t untill now, so I have to pay a lot of VAT taxes) and Jessicurl.
Thanks for sharing this Kathy and Mike'sDeb,
I too try not to bother to much about my FFA and to accept it and keep in mind that there are much worse things that could happen. My kids, husband and myself are healthy and happy and that's the most important thing in the world. I am more and more inclined to not taking the Cyclosporine after all and thus not have the HSI transplantation.
I already use the Curly Girl (CG) method for my hair, for a year and a half now, which is not using shampoo with sulphates, no silicones in conditioner and styling products and no parabenes in both. My hair is much more shinier, healthier and curlier and less frizzier than before.
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