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Comment by Jodie UK on June 22, 2013 at 8:05pm

Celia-I have never had any wigs or hairpieces, I have lost between 3/4 inch and 1 inch all around my hairline, I have really thick hair and up until now have managed to cover up the hair loss, but I hate windy days and always feel a bit self conscious. I have tried all the medication including ciclosporin which did help but the side effects were too dangerous, I am not going to take any more
medication, as I think this condition will eventually burn itself out. I now only use dermovate cream every other night and take tumeric twice daily

Comment by Maddy, California, U.S. on June 22, 2013 at 3:39pm

Pam, I was on HRT (Vivelle) for about 5 years, starting about a year before my first hairloss started. My hormones were going crazy at that time and I had a lot of anxiety...panic attacks almost. The HRT was a God-send to me at that time, but I have also wondered about it and the hairloss (and even called Vivelle once and asked them about it)...but, it could also just be the huge hormonal swings during perimenopause? I was also having insane periods at that time and was losing a lot of iron. My ferratin level was almost non-existant. I also got a bad case of influenza that same year that everything was going crazy, it took me a long time to recover from that. I don't know...there were so many factors going on for me during that year. Sorry about all the details, but I always think details can be helpful because maybe someone else had a similar experience. Anyway, I have also had FFA for about 7 years, although it went undiagnosed (properly) until this current shed started and I started to really look for answers. Mine seemed to go into "remission" for about 4 years until a few months ago.

Comment by Rita - Canada on June 22, 2013 at 3:30pm

Pam, I have been ON & OFF a very mild dose of Bio-identical (creams) hormones.I haven't taken regular hormones,have colored my hair for many yrs, have been on B/P med for 7 1/2 yrs, exercised most of my life, first went to a derm re thinning hair 10 yrs ago but was told it's probably genetic & part of aging and am really not sure when the frontal area started to disappear.

Comment by Celia on June 22, 2013 at 3:27pm

Jodie - 7 years is a long time. Have you moved on to wearing a wig yet. I too think turmeric is having a beneficial effect. Do you take any drugs to help with the condition ?

Comment by Jodie UK on June 22, 2013 at 3:06pm

Hi ladies, when I was first diagnosed with FFA about 7 years ago I was so devastated I tried everything I could think of including acupuncture, which had absolutely no effect on my FFA. Everyone is different but the only thing I THINK has made a difference for me is tumeric, since taking this for the last 5months my scalp is so much calmer with no redness or itching, hopefully this continues, I think the hairloss has slowed down also, but too soon to say

Comment by Maddy, California, U.S. on June 22, 2013 at 1:09pm

Rita - I have colored my hair for about 25 years....but so many people color their hair who don't get FFA, so I don't know. There seem to be so many "what if's" out there...sometimes it drives me crazy. I am a researcher, so I want answers to everything...and I don't think I'm going to get one for this. I, too, have always been a healthy eater and have exercised regularly, including yoga...always took pride in my appearance...especially my hair. It is such an ironic disease. Ugh.

I have also considered acupuncture, but haven't looked into that yet. I would be interested to hear about any experiences with it for FFA.

Comment by Celia on June 22, 2013 at 11:10am

On Nov 27th 2012 CJ - you wrote that you are on Finasteride. Are you still on this ? If so - any good things about it's effect ? Is that what you are now on, Liz ?

Comment by Rita - Canada on June 22, 2013 at 9:55am

I have colored my hair for over 50 yrs. and and wonder if this may have contributed to FFA. I am curious as to whether many of us have done so?? Obviously, it wouldn't be the sole reason but perhaps one of.
Also, has anyone tried acupuncture as it claims stimulation of the blood to the scalp area?

Comment by Debs on June 22, 2013 at 3:55am

Yes, I asked Dr Harries about the effect of gluten and he said there is no evidence that it helps.... that said, if other people are having success with a gluten free diet then we have to listen to our bodies. I have not eliminated anything from my diet, I eat healthily anyway so I will carry on as usual.

Comment by PamW San Diego, CA, USA on June 21, 2013 at 9:46pm

Hi, Rita. The way I understand it is that there are many types of citracricial alopecia. citracrcial means scarring or permanent. One type is LPP and FFA is a type of LPP because the hair loss is in a distinct pattern (around the frontal hairline and eyebrows) and mostly post menopausal women. Regular LPP has many of the same symptoms, hair loss, burning itching, etc. but the hair loss is all over (crown, center). Also young people and men have LPP.

I belong to a facebook group and there are some real fanatic paleo people who insist that they are able to control the disease by eliminating sugar, dairy and gluten. The only thing left to eat are feathers! Everytime I ask the doctors, they say no definitive research to support that claim. I think Deb or Celia or one of the UK people asked Dr. Harries and he said the same thing. I never went to a naturopath, so I can't give you any advice. I also take tumeric 400 mg twice a day. Take it with my Plaquenil.

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