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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 ladies! Debs, the laser is xtrac laser. From what I understand it is pure UVB light and the wavelength is 308nm. I get it done at my derm's office and my insurance covers it. However, there are places that will do it without a script from your doc and you have to pay out of pocket. It is somewhat pricey I think. Mostly this is used for psoriasis, but my doctor says it also clears lichen planus, so I think what he is doing with me is mainly an experiment to see if it will work for FFA. I will say that the results have been very good, but it took a while to see them. I have been getting the treatments for 7-8 months. I don't want to give anyone false hopes as I don't think this has completely arrested the hair loss. However it slowed down a lot, almost not noticeable unless I compare to where I was a year ago. Ugh, I don't know, I was doing so well for several months not thinking about this really at all. I've been stressed recently because we just bought a house, and moved, and I'm applying for jobs and going on interviews. Anyhow, been feeling like my hairloss is getting me down, and I keep looking at my eyebrows and eyelashes thinking they look thin, then the next minute I think they look ok. I still have hope, I definitely do, but also trying to come to terms with the fact that this may never go away completely. Anyone have any tips and how to not be so stressed out about this?? Also, any good ideas for covering up hair loss. My hair is very big, curly, frizzy and wild. I don't know how a hairpiece would ever blend in with that! Thanks for listening: ) So grateful for you all
Hi all, just catching up on the latest posts. April, I'm excited to hear that your laser treatments are working. I think we would all love to try a drug-free approach to treating ffa.
I just returned from my 3-month check up with my derm. I have been taking Plaquenil for 9 months now, as well as using a 5% Betamethasone topical. The doctor was fairly pleased. He was hoping that the ffa would no longer be active at this point, but there are a couple small stubborn areas that are still active. I see him again in six months unless I experience a flareup.
I have just noticed in the last month or so that I'm not shedding quite as much. The pain has gradually lessened since I started the Plaquenil/topical regimin, but it's still quite painful whenever the wind blows hard. The doctor said that it can take years for this kind of pain to go away, and sometimes it doesn't. The good news is that it doesn't mean that my treatment isn't working.
Hi Ladies, I saw my derm last week and my FFA is very active. The inflammation extends almost to the crown of my head. She did several injections and recommended i get them every four weeks. I think i'm going to stop using rogaine and continue with clobetasol, doxy, and plaquenil. Getting eyebrows tattooed on April 29. Excited!
Hi everyone
A really interesting discussion - I've thought for ages that an over-active immune system is somehow at the route of FFA. I have a damaged bile duct which leaks bile into my gut (liver, kidneys etc) and this stimulates the need for my immune system to work overtime. I'm hoping to see a specialist at Kings College Hospital very soon with a view to repairing my bile duct. I'll obviously report back if my improved gut leads to a calming down of my immune system and ultimately remission in FFA. psoriasis and arthritis.
Watch this space!!
April -there are several ladies who have suffered with FFA for many years. My understanding is that - whilst FFA may appear to 'burn out' - the condition is liable to start up again depending upon several factors.
This is great news for you about your treatment ! Are you still having hair loss generally - away from the scarred area ?
Someone posted several weeks ago that her derm had declared that her FFA had stopped, but I can't recall who that was ! Sorry !
Regarding the 2 year timescale your derm said he had read about, I guess he will have also said that the hairloss pre-burntout can measure many centimetres.
April, if your treatment is working and your hair loss is diminishing - DON'T get stressed out about the reduction in treatments. Go with it.
The very fact that your derm has to refer to the findings of some literature underlines the reality that that this condition is really little understood and actually rarely encountered by the majority of dermatologists.
Keep us posted !
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