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Comment by Rita - Canada on November 27, 2013 at 2:15pm

Terry Ok,will try it, part of holding back was that notice on the men's 5 percent package (not for women) but you seem to be ok so will pick up @ Costco & start in a week when i finish a temporary med. I'm on, thanks.

Comment by Mandy on November 27, 2013 at 1:41pm

Jess I was given Betnovate at first this is a steroid liquids that I rub into my hairline and scalp where it is red and inflamed, I started doing it twice a day and now is reduced to once x

Comment by Rita - Canada on November 27, 2013 at 11:17am

Thanks Terry, I'm really wanting to try it, worried that those shedding weeks prior to seeing any sparse growth will be most embarrassing.  I always think on what's coming up and of course, the Christmas season, then a trip and never seems a good time to 'hide out while losing hair'.  Never a good time to lose more of our precious hair I guess.

Comment by Rita - Canada on November 27, 2013 at 10:51am

Hi all, I'm still on the fence re Rogaine as the men's 5% which is what my derm suggested, has posted on its box, Not for use for women.  I know the womens is a weaker strength and that's why the derm said to use the mens.  Is everyone who is using Rogaine, using the 5%?

Comment by jess on November 27, 2013 at 10:50am

Thanks Mandy and Annie.  I have been reading on this site A LOT.  It does help.  I just have so many questions.  My derm did not put me on antibiotics or steroids.  Should I ask to try these meds out?  How do antibiotics help FFA?  Do steroids and the Hydroxychloroquine do the same thing ? 

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.

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