Comment by KarenGinny - Iowa, US on January 28, 2015 at 12:22pm

HI Lori, I've been dealing with this hair loss for about 4 years now. I first noticed hair loss at the back of my head, right along my neck hairline, which I thought was weird but it grew back. Then after some major stress in my life, - husband had heart attack and was hospitalized 2 days, within a week I noticed the hair at my temples just pulling out with a slight tug. I went to a dermatologist and was biopsied and had injections along my hair line and he said it was FFA and not really anything I could do except use some topical solutions for the itchiness.  I was really devastated and the hair loss progressed slowly until now I have lost 1 - 2 inches all along my front hairline and temples. I went to another derm in the past 2 years and he said he thought it was LLP, just a different kind of cicatrial alopecia, and had me try one med to stop the inflammation but I was allergic to it. I am now on Methotrexate also for inflammation and it has been working, but had to increase the dosage the last time I went.  I have been able to cover my hair loss with my remaining hair for the most part, by wearing my hair with long bangs that I pull forward, but like you said Wind is my enemy! If I am going to be outside alot I wear a headband I put across my forehead with my bangs over it, or back a little with my bangs coming out in front. It's kind of a "hippie" look but it holds my hair down. And I can also pull the back in to a ponytail for a more sporty look, Or I will wear a hat when outside too, but there again the wind can blow them off too. I have not tried Rogaine but have considered it to try to make my bang area more full and thicker, because they are fairly thin and I know my bare spots are probably visible sometimes. I keep a comb in my purse to fix it and look in mirrors probably way too much. I am a stay at home mom, and don't work so I don't have to worry about looking good at the office.  But I do volunteer work with my son's boy Scouts, school, and local Autism support group and don't want to look like some strange creature. I have not lost any eyebrows or eyelashes, but do have a bare patch on one of my arms. Wouldn't mind if the leg hair went!  I guess I have come to terms with what I have left, it doesn't seem to have gotten worse in the past 2 years, but it's pretty bad already. I know I may look into a front hairpiece someday but I know they are expensive and I'm getting by okay for now.  Hope this helps,  Karen

Comment by Lo on January 31, 2015 at 4:33pm

Are you taking the plaqenil and/or sti getting injections on your hairline? If so, have you seem a decrease in the loss?

Comment by KarenGinny - Iowa, US on January 31, 2015 at 9:58pm

I did get injections by my first Derm, but my hair loss was less back then and more hair fell out after that, so I don't think it helped me. I did try Plaquenil from my 2nd derm but that's the one I was allergic to and broke out in a rash all over, and had to stop. I really didn't find anything to stop the hair loss, and the first derm basically told me nothing would help and I left and never went back.  Not a happy day. Now I'm just trying to keep the hair I have left, and haven't seen any big changes in the past year.  I'm sorry it's not very good news. Karen

Comment by Joanne Washington on February 6, 2016 at 12:23am

Karen are you referring to  FFA as fibromyalgia?

fibromyalgia

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