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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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Hi.
I just posted the same thing. I've been told I have diffuse AA, too. You are not definitely not alone. I am just starting to look into hair pieces - I've been wearing hats and using Toppik but I think I will need a hair piece soon. I'm wondering if you can share something: do you feel more self-conscious, less self-conscious or exactly the same wearing your hair piece. Also, how long did it take you to find one you like? And how does yours fasten? Stay strong!
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Hi dmf, I wear a topper which clips in. I have two which I got at a hair salon, they are human hair and cost 700.00. I have to wear them to work and at first I really did feel self conscious but now I am getting used to it. Everyone just said they liked my new style. I started wearing it before my hair got too bad. I am afraid I will need a full wig soon. What does your hair look like. How long have you had DAA. Sorry for all the questions, it is nice to talk to someone with the same thing.
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I'm glad you got such a positive response at work, Starshine.(BTW, I like your name!)
Here' a recap of my story:
I was sort of diagnosed about 6 years ago. I say "sort of" because I saw 5 different dermatologists, my GP, a dietician and even spoke to a crazy naturopath who diagnoses by phone (yeah, sounds ridiculous, but by friend swore he was amazing). Every specialist told me something different. My alopecia started with losing a portion of one eyebrow that came back with shots. Then, after a while more fell out. For a few years only my brows were affected, then it moved to the crown of my head. I got it under control with topical steroids and Rogaine but that stopped working two months ago. I finally found a dermatologist I like and just had a scalp biopsy done. He said it looks like Diffuse Alopecia Areata. I do not have the circular patches - just very diffuse ongoing hairloss. Right now my hair is very thin because I am losing lots of hair at the crown and front. There are balding areas across the top and back. The front isn't great but it's easier to hide the thinning there right now. I've been wearing hats, using Toppik and trying to avoid bright lights. I am starting to look into hairpieces but now I want to wait until the biopsy heals.
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Permalink Reply by LilyBell*Murphy'sLawLuvsMe on
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starshine - how long is the hair on your topper? I have tried to find them in my area but long ones in HH are nowhere to be found at any price.
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I had a biopsy too which confirmed AA and since I don't have spots, they called it diffuse. I also lost both brows, but they came back somewhat with injections. dmf, are you still getting treatment. I am using Rogaine and get shots and am on prednisone injections, none of which seems to help. Do you think this could lead to total loss. LillyBell, my toppers are shoulder length. There is a website called Gallery of Wigs which has long HH toppers. you can email the owner, Kathy and she will help you. I am going to order my next one from there as they are better priced, but choosing the right color can be tricky without seeing it.
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Thanks Starshine - the whole color match thing is what has me worried with the net ordering but I may have to go that way.
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Yes, I am still getting treatment. Cortisone shots every 6-8 weeks (which sometimes goes to 12-16 weeks if I can't get in to see my dermatologist). I live in Canada and getting in to see professionals often involves a very long wait.
I use Rogaine 5% liquid on my brows and Rogaine 5% foam on my head. (I found the foam hard to use on my brows.) I try to use the Rogaine liquid on my brows morning and night but often I just do it at night. My doc told me that I needed to use the foam on my head only at night. Your question about prednisone injections possibly leading to total loss is interesting to me. In March the doc tried shots in my scalp for the first time. It really hurt. Seven weeks later I started to shed more than ever before. Part of me wonders if the cortisone shots in my head actually caused things to get worse instead of helping? I don't know. I also have a lot of itching and burning on my scalp. Do you get this?
When I get the results from my biopsy, the doc said we'd discuss more aggressive treatments. I don't know how much I'm willing to risk the rest of my health for the hair on my head. I think I'll have some difficult choices ahead.
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Kathy is great, she will send you toppers to try before you buy them as long as you pay shipping, but I know what you mean and that is why I bought mine at a shop the first time.
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This whole thing really sucks. I do get burning where there is a lot of hair loss and some itching but I think that might be due to rogaine foam. I think I will also cut it back to only at night. Have you noticed slower leg hair growth. I only have to shave my legs now once a week, another thing to stress over although I should probably be happy. Are you married, kids? My husband says it is not so bad but he has a full head of hair. I try to avoid the rest of my family because no onw else knows except my mom. I live in Maryland, so doctors are available but none of them seem to really treat this too seriously. I wonder if they lost their hair how they would feel. I don't think my doc is willing to do anything beyond cortisone injections, and now prednisone which I can only be on for a few months.
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It does really suck, Starshine. I often look in the mirror and think, is this really my head?!? According to my doctor, the Rogaine foam does not cause the itching because it doesn't contain an ingredient that is in the liquid. The ingredient might be alcohol - but I'm not sure. I've also heard that Rogaine can cause itching and discomfort, but I question it a little because I had about a year when my situation calmed down while I was still using Rogaine. During that time, I had very little itching. (However, the burning never fully subsided.) I associate the itching with active AA and hairloss. Of course, this is just based on my own experience/observations. I am also married with two sons. My husband knows about this but I have not told my sons. I worry about telling them as things progress. It helps that they are shorter than me and can't see the top of my head. I haven't shaved my legs in years - I wax. I have found a little less hair growing but I've always been told that waxing for years eventually causes body hair to grow in thinner. I have been losing some eye lashes lately, which I am not very pleased about. I have never heard of injecting prednisone. I know it is stronger than cortisone, but does it make you feel any different?
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Hi Ikke. I was not sure either because I was very anemic and I thought it was due to that but then I lost both eyebrows and my derm did a scalp biopsy which showed AA. Since I had all over thinning, she called it difuse. It is very difficult to find a derm who really cares about hair loss. Dfm, I can relate to looking in the mirror and not recognizing myself. As for prednisone, it is different than cortisone injections. Docs usually give it in pill form in a step down dosage but mine does it in injections every month for three months. I have not had bad side effects yet, but I was warned it could cause bone loss, weight gain and other pleasant things. I have only had one treatment so far. My loss sounds more severe than yours, but that is probably the next step for you. Just thought I would give you something to look forward to.
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Oh yeah, something to look forward to. Every day is a new adventure when it comes to hair loss. Did your doc recommend going for bone density tests, Starshine? If there's a concern of bone loss, you could get one now and then another a few months after treatment ends so you'll know if it's a concern. Bone loss is a health concern in my family and I go for bone density tests every 2-3 years. Regarding this, I suggest making sure you're getting enough calcium, magnesium and vitamin D. Please friend me or post again after your treatment and let me know what happens. Good luck.
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