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Comment by Annie on November 27, 2013 at 10:40am

Welcome Jess, I'm so sorry you have to deal with ffa at such a young age.  You will find a lot of useful information on this site.  I have honestly learned more by reading posts on this site than I have from the three doctors I've seen since my diagnosis in March, 2013.  I've been taking hydroxychloroquine for almost 5 months as well as using a topical steroid on my hairline. This regimen seems to be standard protocol with most doctors when treating ffa.  Hydroxychloroquine helps to reduce inflammation & hairloss in approximately 50%-65% of cases.  It can take several months to know if it's working for you.  I also started using men's 5%  Rogaine foam on my scalp & eyebrows 6 months ago to thicken up my existing hair per my doctor's advice.  I have been able to regrow hair in the areas that haven't scarred over.  Good luck to you.

sallylwess, I have been using Rogaine on my eyebrows for six months and definitely do not look like a werewolf.  My doctor said my eyebrows have not been affected by ffa, but I was never blessed with thick brows and they have gotten sparser over the years.  The Rogaine merely brought back some of the eyebrows that stopped coming in.

Comment by Mandy on November 27, 2013 at 10:28am

Hi Jess,
I'm fairly new to all this too. This group is great and when I first joined I spent some time reading all the discussion and the comment... Finding out info and looking for what others are using etc.
I'm on the same meds as you but once a day at the moment because it makes me feel sick when I take the two, the drug is to reduce inflammation and hopefully slow the progress... Different people are using different things to help promote hair growth and refuse loss.
I suggest to check out all the discussion and the comment feed there are lots of useful info on here and I have to say I've found the group really supportive... And recently lots of inspire ring news... Hope that helps a little Jess xx

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

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