Comment

Comment by Lorn. New York, USA on February 14, 2013 at 7:28am

Debs, I live in New York and I see a doctor at New York University. He has me on those drugs as well desonide cream .05% and clobetasol propionate topical solution. The next time I see him I will ask him what the long term. He did say that it has been newly discovered in 1994. He also thought it could be environmental. This has not been seen in the Middle East. He has Only seen 2 people from china with this. Mostly western people.

Comment by Debs on February 14, 2013 at 1:15am

Lorn - where are you going for your treatment? Some of us in the UK are trying to access those drugs now but we are having to travel a long distance to see a dermatologist in Salford which is a plane ride away for me (or a 3 hour drive each way).
The lady that had FFA since 1996 did not say that it had stopped. If it has only been first recognised as a medical condition in 1994 I don't think derms actually know what happens long term because the longest anyone can have been diagnosed is 19 years... and since not many women would have been diagnosed in the beginning I don't think they would have evidence on how this progresses. I think that maybe it just slows down so it appears to have stopped but I don't know why it would just stop of it's own accord medical conditions don't often do that.

Comment by Lace on February 13, 2013 at 11:52pm

hey Simone.

I decided to go with a wig, since I have lost so much off of my hairline. It was a good solution for me. If your hair is strong enough, and it won't irritate your scalp, a topper might be a good solution. As you can see, I'm Black, and i didn't see any toppers that would work for me.

Whatever you decide, wear it like you own it! It's all in the attitude, I think. Good luck to you.

Comment by PamW San Diego, CA, USA on February 13, 2013 at 9:27pm

Simone, I tried a clip on hair piece. I was uncomfortable, because my scalp is tender where the clips clip in.

Comment by Lorn. New York, USA on February 13, 2013 at 8:03pm

Hi - I am new to this site and was diagnosed with FFA last summer.
I believe this started about 4 years ago. I am on placquenil and doxycylcline. The Doctor is hopeful about stopping the progression. I estimate that I have lost 1" of hairline and my eyebrows. Although, some eyebrow hair has grown back. For the past 6 months, I have had cortisone shots. I have been through a lot medically - but this is a tough one.

Comment by Lorn. New York, USA on February 13, 2013 at 7:56pm

Comment by Simone NJ USA on February 13, 2013 at 6:29pm

Hi everyone:

Since noone knows when FFA stabilizes, I was wondering if getting a wig would be better than a hairpiece. I like the idea of a hairpiece instead though...any thoughs, recommendation would be great...thanks..

Comment by Robyn, Melb. Australia on February 13, 2013 at 6:01pm

Hi Debs,
Did the lady say if her FFA has stopped and if it has after how many years? I think I mentioned before that my specialist tells me FFA appears to have a life of between 5 & 10 yrs, and I agree that all our cases are individual and will probably have different outcome but an estimate would be good to know.

Comment by Debs on February 13, 2013 at 3:36am

Heidi, I did have email contact on another Alopecia support website back last year with a lady that was daignosed with FFA back in 1996. She listed everything she tried, all the same drugs that we are using but she told me she has lost about 1/3 of her hair. The dermalogists are saying you can lose between 2 to 5 inches from your front hairline, so I guess it is just a matter of luck (or genes) how much you lose and we are all individuals so we will react differently to the drugs that we use. The only drug this lady had not used was Actos - she had used everything else that our group are trying. I should say on a positive note that apart from the FFA she is a fit and healthy woman, she has not developed any other autoimmune conditons so the FFA does seem to be quite self contained and not trigger anything else.

Comment by PamW San Diego, CA, USA on February 12, 2013 at 9:24pm

Hi, Rebecca. I take the generic for Plaquenil, hydroxychloroquine like Heidi. I do think it has slowed down the shedding. My hair line is still receding, but slowly. I use clobetasol foam to control the itching, burning and redness. I always wake up calm, and as the day goes on, my scalp reddens and itches. It is hard to tell if it is really working, because you don't know what you would be like if you didn't take it. About a week ago, I started taking 1,000 mg of Tumeric. Haven't seen much difference in the redness yet.

Robyn, I told a handful of friends and my kids. I feel the same way you do about telling people. Besides, I don't need to talk about it with friends because I have all of you and I know you understand me.

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