Alopecia World
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Trying to cope with diffuse AA
Hi, I am new here and was wondering if anyone else has been cursed with diffuse AA. My hair has been slowly thinning for the last four months and now it is so thin that I have to wear a hair piece as it is so thin and see-through. I am trying to be positive, but seeing is slowly disappear is very depressing and I can't seem to focus on anything else. I think the worst part is how slowly it is thinning and not knowing if I will eventually lose it all. This is my first episode of AA and it is soooo scary. It is nice to be here and know that I am not alone.
Replies to This Discussion
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Permalink Reply by LJBMD on
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Yes! My 15 yo daughter was just diagnosed. It has been brutal. She has lost 70% of her hair at least and continues to shed. She was seen immediately by a dermatologist who injected her spots and she uses clobetasol solution. He have added vitamins, but nothing seems to work. She will start oral dexamethasone in a pulse fashion starting this weekend. We have seen the expert at Johns Hopkins and we are headed to Yale and Columbia in a few weeks. The Europeans seem to be more aggressive about treating this. The attitude in America seems to be: “well, it’s only hair, so let’s wait and see”. I think in Europe they are more likely to treat aggressively at first and this may alter long term outcome, but no one knows.
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Permalink Reply by Sarahmiller90 on
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Did all her labs come back normal? Mine did, but my dermatologist said ferritin of 25 is in "normal" range for a hospital but they like it to be between 70-110 for normal hair growth. But I have to take feosol for up to 4 months before I notice improvement. I'm on my 3rd month. I did notice my hair loss slowed but it's not gone. I do feel better because ferritin helps store iron, which I was borderline with that. But I just lost a lot of hair in one spot the past few days, after it grew back in over the past couple months. So I'm not certain if its working. Eye brows though, they are thin and a few bald spots through them. Looks like I over pluck, which I rarely pluck them anymore. I hope they figure out if it's a true autoimmune disorder or caused by something else. They are not sure yet by mine. Mine started after I watched my father passed in hospice. Then I've been battling it every since 1.5 years later. Now if I get stressed, the newly grown hairs fall out and more.
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Hi LJBMD - I'm having trouble replying to you directly on the site. I so truly feel for your daughter. I also developed AA as a teenager at 13, and it came and went for about ten years in a fairly manageable fashion. About 3 years ago (I'm 27 now), I started a cycle that simply would not stop and I lost over 70% of my hair. A completely traumatizing experience. I highly recommend that you visit the Dermatology Department at Columbia. My dr there started me on Xeljanz about seven weeks ago and I have been labeled a "full responder" with complete regrowth. Fingers crossed that this is accurate. I'm not sure that Xeljanz would be an option for your daughter at this time, but please try and maintain hope that this is a disease with treatment options. In the meantime, I'd recommend you get your daughter something like a crown/fall hairpiece or something similar. It took me a long time to accept that I needed one, and while it's not perfect, a 100% real hairpiece might at least make her feel more like herself as she explores her options. Wishing you all the best.
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Essa: Thank you for your response. We are doing everything we can think of for her. She just got a second set of injections last week, and we are applying clobetasol once a day. She will begin high dose oral steroids this weekend. I have spoken to the pharmacist at the compounding pharmacy in Phily. She has seen the specialist at Johns Hopkins (who did not want to do anything), and we are taking her to Dr. Brittany Craiglow at Yale next week and Dr. Lindsey Bordone at Columbia the first week of March. There is also a doctor in Miami I will be taking her to. She got a hair topper made from real human hair and custom-made for her three weeks ago. She refuses to wear it as she says it is too puffy. We are having it redone this Saturday and we have ordered a full enhancement. One of the biggest problems I’m having right now is finding really good hair replacement. There is so much out there that it is really overwhelming. There are hair systems, integral hair systems, hair toppers, hair replacements, vacuum wigs, it is just so overwhelming and a 15-year-old girl only tolerate getting to head to so many doctors and salons before it becomes psychologically taxing.
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I started this post in 2012 and soon after, I progressed to total AU. I lost all scalp and body hair. I was devastated. After trying everything under the sun, which did not work, I finally tried Xeljanz in 2014. My hair started coming in a month later and as you can see from the picture, I now have a full head of hair. If your daughter has an option for Xeljanz at her age, then I would seriously consider it. If not, as Essa said, at least she will know that there is a new treatment out there that has been successful for many, many people. wishing you the best.
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Star Shine: are you on oral or topical? Any side effects? Does insurance cover it?
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LJBMD, I am on oral. Unfortunately the topical, which would be better for your daughter, has been proven not to work. You need to find a doctor who will prescribe it and then find an insurance company that will cover it, as it is very expensive. I am also not sure if she is old enough. There is another thread on here started by Alopecia Destroyed my Life. It has over 600 pages and a wealth of information about Xeljanz and should answer all of your questions. I know how difficult and frustrating this is and my heart goes out to your daughter. Hope this helps.
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