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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 dmf on
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Good question. I'm new, too. I'm trying to click on your general info page but it won't let me. When you click on my name "dmf" do you see a place to add me as your friend?
Oh, wait, I figured it out. I clicked on your name and there was a button down the left side of the page. I added you so all you need to do is accept my request. The other way to friend someone is to click on "send message". If you are not friends, it will give you the opportunity to become friends.
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Permalink Reply by Heather on
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Hi Starshine, I have diffuse AA. I share your pain. It's getting to the point where it's the beginning of the end, meaning I won't be able to fake this anymore soon. Somewhat at a cross-roads...wig?...bald?
Yes, I agree its scary. I think I would have preferred alopecia areata.
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Hi Heather. How long have you had DAA. Mine started nine months ago and I have lost about fifty percent of my hair. I too am scared that I will soon need a full wig. What treatments are you getting.
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Permalink Reply by Sunflower25 on
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I had diffuse AA the first time around as well. My hair came back and stayed for 3 years after that. I now am dealing with AA.
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Hi sunflower. I remember you tried prednisone. Was it oral or by injection and for how long. Do you think it was worth it and might have helped get your hair back. I am thinking of trying it but undecided because I do have some regrowth and I know its not really a cure. Thanks for your thoughts.
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I took the pills when my loss was diffuse. I honestly would never do it again. I had a lot of side effects that just did not make it worth it - even if it helped with the hairloss (which I still don't think it did). I think I was on it for a few months. I did 60mg, 40mg, 20mg, and then tapered myself off from there (he wanted me to stop cold turkey after 20mg but my body wasn't having it). The biggest issue I had was with my heart - it would beat rapidly every time I ate - like I had just run a mile.
With the spots I did try the injections in the first one. Worked like a champ. I would consider getting more shots if I get any other spots that may be noticeable. You can't see the ones I have now so I'm not going to bother spending the money to get it done.
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ThanKs, Sunflower. Even after the prednisone, you still lost all your hair? How long after stopping did it take. It seems like it may not be worth it afterall.
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Its hard to remember, but I want to say I stopped a month or two before I saw growth.
I deff continued to lose hair while on it. Actually, now as I think about it, I'm pretty sure I lost MORE during that time. Like a faster loss.
My growth happened pretty much all at once as well. I saw that it was coming back in, shaved everything, and watched it grow. :) It was a bit slower behind my ears (where I have spots now, go figure), but it did all come back after another month or so.
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Permalink Reply by Sarahmiller90 on
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Hello starshine. I see this post is very old but I came seem to find any new post with diffuse alopecia areata. I myself was just diagnosed with it a couple weeks back. I was wondering if your AA improved or got worse? I've lost 50% of my hair in 4 months, across my whole body too, and even most of my nose hair. They will grow back but much thinner and sometimes no pigmentation. Then they fall out again. Did anything help yours?
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Hi Sarahmiller90- I am new to this group and I just saw your post. My 15-year-old daughter has just been diagnosed with alopecia areata and has diffuse thinning. She has gotten several steroid injections into her scalp and uses topical clobetasol. The hair loss has slow down, but it is definitely not staffed. She has lost at least 2/3 of her scalp hair. I am wondering how you were doing and what your experience has been?
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Hello LJBMD, I am doing ok. My hair loss comes and goes. It started back up recently. I can see where there's so many short hairs, meaning new hair growth, but then some manage to fall back out. The more stressed I am, then it all kicks up again. I have been taking Feosol for my low ferritin along with a multivitamin but I haven't taken any other coarse of action.
I myself had more hair than the normal person, so it still looks like I have quite a bit of hair left. But I lost about 50% of my head and body hair at one point. It got better but then it starts up again. My main spots are the whole... I guess you could say border of hairline, then the back of my head up my neck and on the sides of my head above my ear as it wraps around my head. My right side is worse than my left lol Eye brows too. It starts to get itchy and feeling like tingling, then I know with in the week or 2 I will have hair loss in that spot.
I have the steroid cream but never started using it. If the hair loss continues to get worse, as in I can't hide it any more then I might start using it. My actual bald spots are on my body (legs, pubic region and arm pits) and up the back of my neck on the back of my head, which is easier to hide. I could care less about the body hair lol but if they start coming back, they are thin, wispy and tend to be in grown. Those spots always fall back out in a couple months though. While certain spots the hair has never come back (arm pits, which is fine by me lol)
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