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I thought I was alone with FFA until I found this site
I thought i was alone with FFA until i found this site. I'm quite computer illiterate so please excuse me if i do this wrong. Got the FFA diagnosis a week ago but have been losing hair since Dec. 2010. It really accelerated in the spring of 2012. My first dermatologist said that she thought it was from my SLE (lupus) and that my hair would grow back. So far my hair has fallen out in a 2" band from above my ears to my forehead. My eyebrows are almost gone. I've been on plaquinel for 1 and a half years. I'm using clobetasol and i had injections last week. Any advice anyone can give me would greatly be appreciated. I'm 57 and i went through menopause when i was 42.
Replies to This Discussion
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Permalink Reply by KarenGinny - Iowa, US on
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Hi Brenda, This website has been great for me for information and support. I was diagnosed with FFA im March 2012, but it started at the end of 2010 with a dry itchy scalp. I have the same pattern of hair loss as you do - about 2 inches gone at the ears, temples and forehead. May be more than 2 inches in some spots on the side. Fortunately my eyebrows have not been affected yet. The derm who diagnosed me first gave me the steroid shots, clobetasol liquid and shampoo. Then more hair fell out at the temples and front and diagnosed later with FFA. AT that point he didn't recommend anything, said there were some medicines that were used but they had bad side effects and he didnt recommend them. So for the past year I've done nothing. I'm seeing a new Derm who is getting the records from my old derm and he will let me know if there is something I should be doing to keep the hair I still have. Although, now I think the damage is done. I am 48 and not in menopause yet. I live in Council Bluffs Iowa, so not too far from you! HOw do you hide your hair loss? I've been growing out my hair to have longer bangs that I can cover my forehead with, or wear a headband under my hair to hide the bare spots on my forehead and temples - mostly when outside in windy conditions. I feel like this has limited me in that I am afraid to leave the house without a headband or hat, and always checking my hair in the mirror. I'm not ready for a wig yet. - Karen
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Permalink Reply by Brenda, IL US on
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Hi! So glad you replied to my post. I haven't had any side effects from plaquinel as long as i have something in my stomach. I was prescribed the generic for lupus in April 2011 and developed a rash all over my body. I saw a rheumatologist in St. Louis at the end of that year that told me all generics aren't the same and to try different manufacturers. i found a generic that did't cause any problems but then my hair started falling out worse. My eyebrows and eyelashes were also falling out. The dr said to try plaquenil. I did but still had lots of loss. First dermatologist had me try Clobex spray and Luxig foam. They caused an itchy rash. She said to use rogaine and when i saw her in Oct. 2012 she said my hair was coming back. I stopped using rogaine in January on the advice of my hair stylist and was that a big mistake! My lupus dr. referred me to Dr. Musiek at Washington University in St. Louis. A resident came in first and took a look and said they could bring my hair back. When Dr. Musiek came in she told me i have FFA and she gave me the injections. They hurt on the eyebrows! She prescribed Clobetasol lotion but its making my scalp bright read and itchier and it feels like theres a tight band across my forehead. I was diagnosed with lupus in April 2011. I think i've had it since 1992 when i was fogged with farm chemicals. Developed environmental illness as the docs put it. Was intolerant to everything. Lost 50 pounds and lots of hair all over and thought i was going to die. Allergist sent me to EHC-Dallas and after years on shots and other therapies I'm much better. I could stand to lose 15 pounds! My stylist has my bangs coming from the crown of my head. She has the sides feathered forward. When the wind blows everyone knows my loss but i looked a lot worse when i was sick. I'm 57 and went thru menopause at 42 due to surgery. I've never worn much makeup but i've got to learn how to use it. Sorry this is a book. I'm going to check wigs. Brenda
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Karen- The right side of my hair has receded 1 and a half inches and the other sides gone back 2 inches. I used to have a widows peak but now there are three wiry hairs there. So i've lost between 1 and a half to 2 inches on forehead.
Brenda
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Hi, Sorry I didn't see your reply back from July, but wanted to update you. I went to a new Dermatologist in Omaha, and after looking over records from my previous Dr, he prescribed Plaquenil to take twice a day. After being on it for about 9 days, I started getting a hives-like rash all over my body. It's itchy but not really bad, just red and blotchy and irritating. My dr told me to stop the plaquenil and take Allegra - an antihistamine, and now 6 days the rash is starting to go away but still have some on my arms and legs. Now I don't know what to do other than just figure that my hair is gone and there's nothing I can do about it. I see my Dr on the 29th and maybe he will have some other treatment, but I'm not sure. It's just very depressing to try to make my hair look good anymore. I just feel old and ugly. I still use haircolor, because I don't want to half bald and grey! Sometimes I just want to put on a hat and hide, which is fine at the grocery store, but not for social occasions. I do have a great and supportive husband who says my hair looks okay, but I know he's a guy and doesn't look as close as a woman would. And my two sons, age 11 and 13 don't seem to notice, unless I complain about it, and then my younger son says, "Oh, mom, I think you are beautiful". He's so sweet! - Karen
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