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Permalink Reply by Chris on November 27, 2014 at 1:38pm

Hi Amy,
I'm 44 and I have FFA also. It took a while to get a diagnosis as well. At first, I thought I had some kind of infection on my scalp, but it turned out to be the scarring inflammations. I stopped using topical steroids a while ago, because I didn't think that they were really helping. I do notice that the veins at my temples are more pronounced, but I think it's just because I don't have any hair there any more. I've been gluten free for about a year now. I saw some reduction in the inflammations with a G-F diet. I've seen some improvement with Nizoral shampoo, and topical salicytic acid. I'm not sure how much it helps, but it certainly doesn't hurt. My eyebrows are pretty much gone now. I've done a lot of reacearch on the medical treatments for FFA, but I decided that the outcomes didn't justify the health risks, so I don't take any medication or steroids. I'm just dealing with it as it progresses.

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Permalink Reply by Joy on November 27, 2014 at 2:19pm

Okay girls I have the same diagnosis and after digging for a lone time have reached several conclusions - one most of the people who have this are driven individuals with huge stressful events in their lives.  I have always been draw a line -step over - focus and go on - but I have not been dealing as well as I thought - obviously my hair is falling out!  No doctor that I have been to can find anything wrong which from all the research is the norm because we are all predominantly healthy but just not quite right and most of us know it but the doctors are perplexed and really in this day and age have no time to fix it except give a prescription for something that might work.  WE NEED TO FIX OURSELVES!!!!  This is an auto immune response I believe to heavy stress and then our bodies get so confused that they start attacking our hair follicles.  In the bigger scheme of things it could be a lot worse as there are many auto immune disorders that most of us would not want. Losing our hair has definitely gotten our attention. I went to my dermatologist and am only using the topical as it does not have any side effects - at least that I can tell - I also have noticed the vein thing - I also have tingling for lack of a better way to describe - have had for almost 6 years on the top and the bottom back. I laughed when he told me that the other medicine that he would prescribe could in the rare event cause plaquing on my retina.  Obviously this whole thing is pretty rare - probably under reported - so opted not to go there.  I think in my case at 65 my regular doctor gave me a shingles shot - a pneumonia shot and just to top it off my ob/gyn opted for prolia.  After all of that I had huge dermatitis issues on my back and along my hairline - almost like cradle cap in an infant.  In March I went on the Dr. Oz diet and finally lost the 15 pounds that I had accumulated over the last 6 or 7 years.  In May another huge traumatic personal/work event - and then the fall - which in the beginning I did not notice.  My hair got longer and thought about clipping it up and much to my shock - the same side that my injection had been on had hair loss from temple around behind my ear and down - some on the right side but much more pronounced on left.  I am writing all of this in hopes that what has really helped me might help you as well.  I am now taking three mega stress tabs a day - timed release - from my health store - I can not tell you all how this has dramatically improved my sleep and the wonder drug for me has been curcumin.  I am taking 750mg twice a day - I had only been taking it once but thought I would add a second and it has stopped all the sensation at the back of my head - I still have a little tingling on the top but only when I get a little stressed.  I have decided that I am going to take a stress and a curcumin three times a day every 8 hours as I think that that will even work better and will report back.  I believe that my adrenals are very fatigued so I am going back to the health food store tomorrow and see what they have to balance them off.  I will report back and hope that maybe some of you will have similar results.

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Permalink Reply by NatalieW on November 29, 2014 at 2:57am

Hi - I also started symptoms at 38 with eyebrow loss and had SO many thyroid tests. Such a frustrating thing to get diagnosed as it is not common. I'm sure mine was kick started as my second child was really unwell and I got very little sleep (and very high stress) for the first year of her life.  I have also seen a difference with gluten free diet, and taking Doxycyline.  I hope you find someone good to talk to in San Diego - sorry but I'm in NZ so no help there. Good luck

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Permalink Reply by AviatrixAmy on December 1, 2014 at 1:03pm

Thank you ladies! I have recently added higher levels of vit D3, Fish Oil and Alpha Lipoic acid to my diet. Ironically, my oldest daughter and husband are on GF diets, so I guess I'll give it a go. I'm already virtually GF anyway. I live a fairly stressful life but have always felt balanced w/exercise and down time. It does make me wonder, though. Listening to you Joy- I too am a very driven, high achieving individual. Stress- ugh!! NatalieW- what's Doxycyline?!

-Amy

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Permalink Reply by NatalieW on December 1, 2014 at 3:45pm

Hi Amy - Doxycycline is a Tetracycline antibiotics. Some Derms prescribe it to try and slow the progression.  I have seen a lot of shedding in the past few weeks after starting Regaine (Minoxidil) so not sure if it is the Regaine starting to take effect or the alopecia going faster! Argh. It is a frustrating thing. Funnily enough, my daughter is gf too. She was diagnosed with allergies when she was little, had been very sick since birth, and I went off a lot of food (including gluten) while breastfeeding. The Derm thinks that mine was triggered when I started eating gluten and other foods again when I was already very run down and getting very little sleep. I am now off gluten, juicing veges and trying to be as low inflammatory with my diet as possible. It certainly takes the redness away from my scalp and I feel quite self-conscious when my scalp is bright red!

Natalie

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