Comment

Comment by Maddy, California, U.S. on November 28, 2013 at 9:04am

I have also contacted Dr. Christos. We are going to set a time as soon as I return from my Thanksgiving holiday away. Celia - that is a great idea about the one page synopsis! I will definitely do that. Thank you all so much for all of the support and for all of the information. It makes me feel not so alone...even though I would never wish this condition on anyone.

Comment by Celia on November 28, 2013 at 4:50am

The e mail address is                    christos.tziotzios@kcl.ac.uk

At Guy's Hospital research clinic they are applying for a 3-4 year grant to research into this condition.  I wonder if the ladies who have recently joined us would be happy to contact Dr T (I asked him for the pronunciation of his name and we agreed that Dr Christos is easier !!)  I wonder also if those of you not UK resident would contact him too.  I sent a one page synopsis of my condition :-

Age

Onset of symptoms

Opinion as to the trigger for this

Medication

Family history etc

Thanks yet again to Debs for doing the groundwork at the CARF meeting recently.  XX

 

Comment by Celia on November 28, 2013 at 4:42am

Good morning all.  I have just had my chat with Dr T.  He is most interested to learn that there seems to be an increasing number of pre-menopausal women who are joining our forum.  He is very keen to be contacted by FFA sufferers, as those of you who have spoken with him are aware. 

Comment by sallylwess on November 27, 2013 at 8:10pm

Hi Jess, I am so sorry to hear about your diagnosis.  This is the place for you because you will get a lot of great support.  I, like the others, have read through everything I could on this site and learned more than I could ever have learned from a doctor.  I actually printed out part of this discussion and gave it to my derm who thanked me profusely.  She also asked for the name of the site so she could give the information to another patient of hers who had just been diagnosed. I'm sorry you are having to deal with this at such a young age.

I saw four dermatologists, three internal medicine doctors, and one endocrinologist before anyone diagnosed my FFA.  Mostly, I was dismissed.  Finally, a derm biopsied my scalp, and came up with the diagnosis.  I was given clobetasol.  I have not used it much because I try to stay away from steroids.  I have now started going to a dermatologist who actually missed what this was in the beginning, but is now very interested in doing what she can.  I hope to start the Rogaine in the next week or so.  I am also doing a lot of reading on the diet in regard to inflammation.  I will start the TQI (Http://TQIDIET.COM ) after the first of the year.  I figure I might as well not set myself up for failure by starting a new diet just before the holidays.  I hope this is helpful to some of you.  You have all been so helpful to me.  

Comment by Jen on November 27, 2013 at 7:16pm

What about using the Rogaine only on bald spots.  Will there still be shedding? What happens to women (beside shedding and possible hair growth) who use the Rogaine for men?

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 ? 

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