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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.

Comment by Robyn, Melb. Australia on February 12, 2013 at 5:54pm

Hi Rebecca,
I'm not really sure whether the Plaquenil helps with the redness & itching as I have never experienced that and I was diagnosed about 3 months after noticing the first small bald patch near my hairline- the biopsy I had indicated FFA with some scalp irritation which cleared up using Serbizole hair shampoo. The irritation was very mild though and only a bit like dandruff. My specialist prescribed a couple of steriod based lotions for redness etc, but that never eventuated so I didn't use them for very long. My experience is that my FFA appears to be moving slowly compared to some of the comments I have read here and it's possible that is because of the Plaquenil but I couldn't say that for certain - it does sound like a couple of others on the Plaquenil are having some success also though, so I think it's worth a try if it agrees with you. It would be wise to check with your specialist about that.
Celia, I have also decided not to tell people about my condition apart from close family & a couple of friends. It's a strange type of condition to talk about and quite personal. I think because it involves in our 'vanity' we feel slightly embarrassed about feeling so distressed. No one I've told thinks any differently about me and they were all very supportive.

Comment by Heidi Short UK on February 12, 2013 at 5:20pm

Hi Rebecca I'm on hydroxychloroquine which I believe is the same as plaquernil. I'm sure it has helped slow the hair loss down but it hasn't stopped it! Sorry but I don't think there is a magical cure at the moment. I think it gradually burns out but I don't think anyone of us can honestly say they have heard that it just stops. I think most of us on this web site are relatively new to FFA (one to two years) it would be nice to speak to somone who has had it for ten years to see what they had to say!

Comment by Alice on February 12, 2013 at 8:14am

Aimee - In addition to using the tea tree oil shampoo & conditioner, I apply pharmaceutical grade tea tree oil directly to my scalp, w/out diluting it. There may be a more effective method, but I put my finger over the opening and tip the bottle over. Then, I start at the hairline and kind of "scratch" the oil back w/ my fingertips. It's a very thin oil (and my hair is pretty fine), so seems to spread easily. It smells strong at first but dissipates quickly. Unlike the clobetasol I was using, I don't have to worry about the tree oil dripping. I wouldn't want to get it in my eyes, though.

Comment by AC from CA, USA on February 11, 2013 at 11:56pm

Hi Pam-- Thanks for the reply. I am in Sacramento. I will definitely lobby for Plaquenil, though my derm wants to wait for the biopsy results. That said, I'm not really willing to wait 3-4 weeks without getting treatment. Thanks again to all for the sharing of experiences.

Comment by Robyn, Melb. Australia on February 11, 2013 at 9:20pm

Hi ladies,
Just catching up on all the information as I haven't been on the site since Friday. Simone I don't believe I have had any side effects from the Plaquenil and I have been on it for almost 2 years now. I am getting my eyes checked every year (no sign of any retina damage at this stage) and will continue to monitor that as I don't want to create a more serious problem! At 59yrs old I try to keep fit and healthy with moderate exercise and a good diet and in the past 2 yrs I have kept my weight the lowest I have been since my 20's. I am wondering whether the Plaquenil has something to do with that as when I first went on it I read some feedback that suggested people tended to lose weight. I also mentioned previously that I no longer get heyfever having had it all my life - also wondering if Plaquenil would be affecting that (which is a good thing). I believe my FFA is slow moving (possibly due to Plaquenil) and I have never had signs of itching, redness etc that a lot of you are talking about, which is some consolation. My specialist checks carefully for those signs when I see her which is at the moment every 6 months. While the photos of my hairline she has taken certainly show a difference to 2 yrs ago it has only moved about 2cm in total with a bit of thinning at the sides. My eyebrows may have thinned a bit, but I still get them plucked so I don't really notice that.
Sandy in regard to hair style I am still colouring my hair (look way older than 59yrs if I let it go grey - and the hair loss is bad enough!) however I only use a semi-permanent which is probably a bit gentler than a permanent colour. I have very curly hair however I prefer to have a straight fringe (I think you ladies call that bangs?) with curls behind - short hair and I'm gradually taking it shorter. The fringe covers the receding to a degree, but I'm not sure how much longer I will get away with that! Curly all over is a bit old-fashioned looking so I'm keeping with the straight fringe for the time being. Of course always having had curly hair - I have always wanted straight hair! Maybe a wig won't be so bad after all - I won't have to use a straightener!
Hi Aimee, I think we all understand what you are going through and I hope you find everyone's support helpful, I certainly have.
Love reading all this, thanks everyone. Robyn

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