Replies to This Discussion

Permalink Reply by Carissa on August 6, 2009 at 9:28pm

Hello! I'm Carissa, I probably wouldn't be much help to you, as your AA is differrent from mine. And it's diferent for everyone, I think,so it's hard to predict how much, how fast, your hair is going to fall out. Right now, I'm in the fallout time. My hair is starting to fall out again. It will re-grow (most likely) and then it will fall out again. That's what I come to expect. I, myself, wash and brush my hair normally. You could try certain shampoos that might stimulate your hair folicles,but they would only stimulate. Who's to say that they'll actually do anything? If I were in your position, I couldn't see myself shaving my head so soon. I'd wait it out, wear scarves, and wait for some sort of pattern like the one I have now. It falls out quickly a few times a year, then I notice my hair thickening in a differnet section of my head. It's really weird. But I'm not a dermatologist, so maybe it's expected? Sorry,I'm not much help.

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Permalink Reply by Carly Petko on August 6, 2009 at 11:45pm

Hey Carissa,
It was so nice of you to respond! Thank you, it is a huge help. Being that I am totally new to this it is so comforting to hear about what others have been through and what they have come to understand. it seems like the doctors ive seen just seem to not be able to give any answers. So thank you. How long have you been going through this? Thanks Carissa!

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Permalink Reply by Carissa on January 6, 2010 at 11:10am

So sorry for such a late response! I've had this since I was 3 years old. So, it's nothing new to me. Only recently, has my hair been at its thinnest. Right now, it is very thin. Quite embarrassing. So I've taken to wearing hats now,and I'm ordering a wig for the first time. Hope everything is workin out for you!

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Permalink Reply by Carly Petko on January 7, 2010 at 7:56pm

Hey Carissa
I ended up wearing a wig. it was the best thing i did for myself. I absolutely got my confidence back and people go crazy over it. They stop me on the street to tell me how much they love my hair and ask who my stylist is (haha). Since I got the wig my hair has been growing back. i am really encouraged by this. I have no more bald spots. In fact, im hoping to stop wearing the wig soon. I just fear stopping wearing the wig then it falling back out. But im hoping for the best. keeping hopeful. I hope your wig works great for you!! im sure you will look wonderful.

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Permalink Reply by Barbara on January 8, 2010 at 10:20am

I am in the same boat. I got a wig right after diagnosis June 2009 just for confidence and to be so much less all-consumed with fear of the bald patches being apparent to someone. BTW - JUST yesterday got the letter from insurance that they would cover the wig (submitted claim in June, was denied and I finally had to go through the Appeal process).

Went to my new derm last week and told him I wore a wig to work and he looked surprised. i said I could get away without one now (since my major bald spots are in the back and covered by the longer hair that falls over them), but since I don't know if I will have a recurrence this Spring, don't want to stop and start with this "hairdo" and make things all the more apparent if I have to start up again! What kind of wig did you get?

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Permalink Reply by Carly Petko on January 8, 2010 at 10:53am

Hey Barbara,
So I scheduled hair appointment for TODAY. I am going to get a little pixie cut and try to stop wearing my wig. I have been thinking so much about it and I feel SO fortunate that my hair is growing back. i am SO lucky, this has been such a difficult process. I knwo it may fall back out. But it may not. But what I think Ive learned is the hardest part is worrying about what everyone else thinks. And you know, im so over that. If my hair falls back out after I rock the pixie cut, im just going to come out of the closet with it and put my wig back on. And maybe ill feel better. I think holding it inside from the my co-workers, old friends, being embarassed, ect. has been the hardest part. I know this is easier said then done and im scared as heck, but I think this is the best way for me to begin the healing process. To start and be proud of who I am again. Its going to be really scary but i think im ready. My wig is a monofilament synthetic Renee of Paris. I love it. People think its real!! They ask me who my sylist is (haha)!! In a weird way, im a little sad to loose it. I have had some fun with the wigs and have never had such perfect hair. So if I have go back to one it wont be with a heavy heart. you know what I mean? I have some bad and worrysome days, but im really trying to keep positive! I am so gla to hear you are doing well too. What kind of wig is yours?? I think if my hair comes back out again I want to invest in human hair..... Hope you are having a great day!

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Permalink Reply by Barbara on August 7, 2009 at 5:04pm

I wash my hair very carefully. I don’t scrub, I don’t run my fingers through, and I don’t get my fingers down on the scalp. I put the shampoo on my hands and kind of stroke it through. I have ointment that I apply twice a day, so the hair gets gunky looking fast and I have to shampoo it out. I do the same thing with conditioner and run the wide toothed comb through while I am in the shower – again, very carefully. Also, when I brush I brush it very carefully and hold onto a handful of it while I brush the ends. I do know that the hair that is on the edges of my bald spots is compromised and weakened and I am doing what I can to keep each and every last hair I have! I get cortisone shots, too. I was only diagnosed on June 1st, 2009. After a month of growing new spots I have not gotten new ones since then. Hair is coming back in some spots and I ordered Dermamatch this afternoon. I am going on vacation to FL with another couple and cannot be wearing my wig in that heat and at the pool, so need to find something that works. Hope dermamatch is it.

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Permalink Reply by Carly Petko on August 7, 2009 at 6:47pm

Hey Barbara,
Thanks so much for the advice.I am going to buy a wide tooth comb today, bc it is the worst when I brush. So you were diagnosed not too much earlier than me... So you bought a wig? Are you wearig it over your hair? Does that work well? I was thinking about that! How are you doing with everything? I think I am handling it the best I can it is just the hardest when I brush and wash my hair. I have gotten one cortozone treatment which has really helped and I am growing a lot of hair back but also loosing a lot of hair at the same time. some weeks are great and others I loose a lot. I am getting another cotozone treatment on Aug 17 and am hoping for the best.

Ok, the dermamatch has made this experience so much easier that I think it would have been without it. I am so glad you got it I think you will be happy with the result. I would play with it a bit and make sure you get the hang of putting it on. I find it work best when I put it on when my hair is wet after the shower then blow dry. It stays on all day and sometimes a couple days. It will be perfect for Florida. Let me know how it turns out.

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Permalink Reply by Deborah Gay Smith on August 10, 2009 at 1:06pm

Whats a dermamatch Barbara? Never heard of it before. I've been getting cotozone shots and also putting on a solution that won't affect my skin on my head.Thats suppose to stop the shedding, and strenghen the fotacolis(sp). thanks for your time:)

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Permalink Reply by Barbara on August 10, 2009 at 5:23pm

Hi Deborah,

I get shots, use Minoxodil (rogaine) and some ointment that has cortisone in it - can't remember the name. Here is the link to the dermatch http://www.dermmatch.com/
it is a concealer. I have checked on it a lot and heard mostly positive reviews. You do have to have SOME hair, apparently, for the stuff to adhere to. I plan to put it on my nearly bald spots on my crown and temples and then do comb overs. Right now the bald shows through the combovers! What solution are you using on your head? Does it work?

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Permalink Reply by Barbara on August 10, 2009 at 5:18pm

Hi Carly,

I have my 3rd cortisone treatment on Thursday. My husband says some patches have hair, some are starting, and some have none - especially the ones that only got one cortisone shot (they weren't around for the first round of shots). Boy those shots can hurt but I am desperate and will try anything! My wig is not one of the full wigs that many members are wearing (boy that was hard to type - "members" - not a club I would have wanted to join until now!). I think they called mine 3/4. I have 4 clips that hold it on and I wear it over my hair. The hairdresser ordered me more coverage than I needed because we didn't know how many patches I would get - as it was I didn't get any additional ones, but a few, but some definitely got bigger. So the bangs are my own, and the under hair is my own. I wear a head band right where the bangs - the wig bangs – start. We left the wig bangs are a bit long because we wanted to be able shift the hair piece forward more if I continued to lose front hair .

Right now I have significant hair loss - thinning and bald - on both temples. That is where nothing has come back yet, and the most noticeable of all is a big old bald patch right on the crown of my head. Since I have little temple hair, I cannot cover the bald spot reliably anymore. So in public I wear the wig. On weekends bumming about I have taken to a baseball cap. A relief to leave the hair piece off for a couple days!

I would encourage you to be very careful washing your hair and use tons of conditioner and run the comb through in the shower. Like you, I am growing hair, but I still feel I am losing hair in the shower and I hope that the dermatologist treatments will be a miracle cure. Glad I found this site though, since the odds are not really in my favor that way, are they?

Thanks for the encouragement. I expect derma match any day now!

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Permalink Reply by Carly Petko on August 10, 2009 at 6:47pm

Hey Barbara,
Boy I am glad I met you. My hair sounds EXACTLY the same as yours! I used to be able to cover the bald spots on my crown but now it is impossible. I went yesterday to buy head bands, scarfs and what not, but it was a really hard weekend for me. Last week I was still able to cover the big old bald spots and now I cant. It drastically changed over a few days.

I am going for my second cotozone treatment on Thursday. I too, really hope that it is the miricle cure. I 1st treatment seemed to help grow a lot of hair, so thsts good, I just wish they had somethign to make it stop coming out. It is just so shocking ya know? When I look at how different I think I look. I have a big patch on the back of my head and either side og my head I can still (just barley) cover, but most of my bangs are gone and two large patched on the crown which makes me look bald. The dermamatch absolutely helps. It has been a lifesaver for me and if your hair is like mine it will make a big difference! If you need any sort of help putting it on contact me and I would be happy to call you and walk you through it. But I think you will get it.

I think the 3/4 wig could be just what I need as this worsens. Have you talked to a lot of people about this? I just dont know what to prepare myself for ya know? Should I prepare for the worst case scenario or will it get better? That is what I think is the hardest part.

You will love the dermamatch it makes SUCHHH a difference. When do you go to FL? That will be great. Nice relaxing vacation :)

Best,
Carly

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