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Comment by jess on November 27, 2013 at 9:05am

Hey I am new to this site and posted this yesterday but i don't think anyone saw because it was in the wrong place.  please let me know if anyone has any words of wisdom for me:

Hi everyone,

I was just diagnosed with ffa this past friday.  I am only 32.  My eyebrows are mostly gone.  This started a little over a year ago and I went to different derms and they all said alopecia but was not given the right diagnosis till last week.  The new derm put me on the hydroxychloroquine 200mg twice a day.  does anyone know if this will make my hairloss stop?  does anyone know what i can do to keep the hair i have left?

Comment by Mandy on November 27, 2013 at 6:45am

Morning Ladies, I'm off work at the moment so I am trying to chill out a little and have a little me time :0)
I had an email from Dr T and he is going to call me... Called my Derm today about feeling sick and she suggested I reduce the dose to one a day in the evening with my evening meal... So fingers crossed this will calm down x

Comment by sallylwess on November 26, 2013 at 8:53pm

Pam, that is excellent news.  I'm going to try using Rogaine.  My dermatologist suggest that I try it. I will stay away from the derm rollers.  I asked my dermatologist about using Rogaine on my eyebrows.  She said, "No.  You will look like a werewolf."  LOL

Dr Christos Tziotzios is a researcher with Guy's and Thomas' Hospital in the Saint John's Institute of Dermatology in London.  He is doing research on FFA.  He did accept me into his study because my condition has been confirmed by a biopsy.

Comment by PamW San Diego, CA, USA on November 26, 2013 at 7:05pm

Hi, everyone. Just came back from my dermatologist and she said that she is seeing new hair in the bald areas where I have been applying Rogaine. I asked her about the derm roller and she said that her only concern would be that I could get an infection. She said that the theory behind it is what Deb explained - creating a wound so that your skin heals in a healthy way.

Just a question - some people are referring to this Dr. As dr. Christos. Is this the same man? Also, what research institute is he connected with?

Comment by sallylwess on November 26, 2013 at 1:34pm

Hi All, I also spoke with Dr. Tziozios today.  I am so appreciative of this site because I was able to learn about the study that is going on for FFA through all of you.  I hope that Dr. T is able to learn much from what he is gathering from all of us that will be helpful in finding a cause for and a cure for this disease.  It might not help us, but perhaps it will help others in the future.

Comment by Jules UK on November 26, 2013 at 1:12pm

I only take one 200mg Plaquenil a day, and no side effects. Funny how it affects some people adversely. Hope it settles down, Mandy.
Spoke to Dr Tziotzios today. A similar conversation to what others had. He said it would be a 4 year project. He described the situation as a an "explosion" of FFA in the UK. He really seemed to appreciate how distressing we all find this. He knows all about the forum and I told him it was now buzzing!!
Just 8 days till new eyebrows..... Xx

Comment by Polly UK on November 26, 2013 at 12:46pm

Hi Mandy, I started with one a day for 4 weeks - tried taking 2 a day after about 2 weeks but felt sick then tried again at 4 weeks and was ok. A little nauseous sometimes but doesn't last long. I made my derm laugh when I told him I take each tablet with almond milk (not cows milk) followed by a ginger biscuit.
Caro I love your new profile photo :)

Comment by Mandy on November 26, 2013 at 12:25pm

Hi all just started talking Plaquenil twice a day... Second day and feeling very sick... I have been advise to take it after meals. Just wondering how others got on x

Comment by Paula uk on November 26, 2013 at 9:51am

Hi All,
Firstly,Thankyou to Debs for all the information given.
I spoke to Dr. Christos today and I will be part of his research study.
He just wanted to know about health history up to now,medications ,contraceptions ,pregnancies and surgeries.Again asked what I thought or felt may have been the trigger in my case.
So fingers crossed ladies.
Oh, one interesting thing he did say was it was epidemic and a significant rise in cases.So not as rare as I was first told.!

Have a good week ,
P x

Comment by Annie on November 25, 2013 at 10:35am

Regarding topical steroids & a sore scalp:  I am extremely tender right now, but it seems like the redness has subsided and I'm not seeing hairs fall every time I scratch an itchy spot. I guess I'll continue using the topical, but it does make me miserable.  My doctor keeps saying that he doesn't understand why topical steroids should have such an effect on me.   I have a hair appointment after work today.  My hairdresser always looks over my head for changes, so I'll ask her if she can tell any difference since my last visit 6 weeks ago.  What would we do without our hairdressers?

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