Comment

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.

Comment by Rita - Canada on June 21, 2013 at 9:10pm

Thanks so much Judy and Debs re the Tumeric info. My dermatolgist did not do a biopsy and just told me I have FFA. I wonder why I didn't have this test. Several people mention they have Lichen Planiplaris & Cicatricial & Scarring Alopecia & can not figure out if they are all one and the same even though I've tried to pin this down on the internet. Does anyone know?
Also, I have enlisted the help of a naturpath who is adamant about the effect that a Grain Free (Paleo) diet has on any body inflammation. Even though I am willing to try anything to save my thinning hair, I am having a difficult time staying with it.

Comment by Debs on June 21, 2013 at 4:26am

MADDY, thanks so much for your post. This is the first time I have heard any doctor categorically say they have managed to stop hairloss in any patients. The fact the Dr Goh is an alopecian herself means she really understands the impact of FFA on us all.

RITA, I take turmeric extra supplements, 2 capsules a day ; turmeric 400mg. I have traweled the internet trying to find the optimium dose for taking turmeric supplements but since doctors don't prescirbe this spice you can't really get a definitive answer. There are other natural anti-inflammatories like ginger, bromelain, black pepper. The supplement I take also includes these. I guess if we take turmeric and some of these others we will cover all bases.

LACE, hello nice to see you back. How is your wig holding out? I am changing my Jon Reanu's about every 4 months but my hairdresser is great she is extending their life by cutting about half an inch off the bottom when the fibre starts to get a bit rough and the wig is good as new so I reckon I can wear one for about 6 months in the future.

Comment by Lace on June 20, 2013 at 11:06pm

Hey everyone. Sorry I've been AFK, but it's good to be back and see others' postings.

As for me, still wearing a wig full time. I'm pretty much used to it. Looking forward to going through all the posts since the last time I was here. Best to all of you!

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