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Really interesting. I am assuming this drug has now received approval in the US - no idea whether it has here in the UK, as we tend to take an absolute age to go through the hoops.
However, the emerging evidence linking FFA to SPF makes me very wary about introducing yet more chemicals into my body.
And I don't have scarring. I have had Lichen Planus and believe there is a link there, but my FFA simply simply my hair disappearing into the ether, and my eyebrows going altogether. No veins showing, no scars.
I have written before about whether everyone who has been diagnosed with FFA has exactly the same condition, or whether in fact there are different things going on. Who knows? It is all so very difficult to decide what to do.
But good luck to you - keep up posted on what happens.
It is interesting, I tend to agree with DeniseC though, after having two not very good reactions to drugs meant to help this FFA, I am leery about trying anything else. I also have Lichen Planus with disappearing hair, still have eyebrows, just barely though!
Again I will echo DeniseC, we are so lucky to have this group where we can discuss are symptoms, treatments, trials and errors etc..
There must be a way to take advantage of all of us being on this forum, a way to chart all of our different symptoms, I have my own symptoms, but then someone else will have some of the same as mine, along with different ones, and so on- the one same in all of this is that we are all losing our hair and we don't know what the absolute cause is!
Sorry to rant on Jacq :-( yes good luck and keep us updated!
Recent research 'suggests' a link with SPF. My immediate response was that it certainly didn't apply to me, as I am not a sun worshipper. But I do use face creams, and always chose one with SPF to protect against the sun.
I have no idea at all! But I am not going to use creams with SPF anymore - not worth taking that risk, I don't think. And nor is my daughter (her choice, not mine) or granddaughter.
My personal view is that the clue for me as an individual is the lichen planus. I truly believe that is linked; that the problem lies in my immune system. In my family we have various auto-immune conditions - psoriasis, reactive arthritis, Kawasaki's .... I am the only one who has lost hair, but I am the only one who has had lichen planus.
The question for me then becomes twofold - first, what causes the problems with the immune system, and second what can I do about it? No one knows about why the lichen planus (and this) hits, but I intuitively feel stress opens the door. So I try not to get stressed, but not easy when you have a very demanding job and a complex family life.
I take Chinese herbs (vile things) to stabilise my immune system and have acupuncture and cupping, and I take Immiflex. I am careful what I eat, but not obsessive, and I take no medication at all (fortunately, apart from this, I am rarely ill).
And I try not to get too hooked up about the whole thing. NOT EASY.
Keep smiling Denise - it is a beautiful Autumn morning here in England, the sun is shining, the leaves are glorious .... and I've got work!
Currently gathering information for https://papersmart.net to be used in my research related to FFA. The case study presented here looks interesting therefore can be used in my writing.
Thanks for sharing this! My dermatologist says that there is no regrowth with FFA, only stabilization. So I find it interesting that the patient in this case study had regrowth. What has your experience been, everyone?
I was diagnosed with FFA in January 2015 and I've been taking 2.5mg of finasteride since then. A few weeks ago visiting my Dr., Dr Bordone, who is at Columbia Universities Doctors and has a grant since 2015 or '16 and has been doing research all this time, told me it's unusual but even though I have chronic inflammation on my scalp (and I have it in my body too) after the frontal hair loss I had back in the 1st 2 years, the loss seems to have stopped. I am able to wear bangs and sometimes they seem thinner than other times but the rest of my head remained thick with hair. I am sure this is all related to inflammation. I'm sure that statement is no revelation but, I get an inflammation flair up in my whole body and my scalp rages.
I believe this disease is a result of Plastics. It's my own suspicion. call it paranoia or fake news, whatever...I'm convinced the chemicals that create everything we use have toxins. It's not completely farfetched since there's a TON of research proving women in particular have high toxin levels directly related to plastics in their DNA! yes, DNA! Not sure exactly what we can do since EVERYTHING has plastic including the little thingy in my hip my Surgeon put in me as a staple after my hip labral repair in 2017.
*sigh*. sorry to be such a downer
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