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Comment by Heidi Short UK on August 8, 2012 at 2:48pm

Celia I did read the article it was interesting, i wrote to Dr harries at the weekend. i don't know if he will reply , I hope so! Karen, my hair line just looks like a mans receeding hair line. My fringe covers it at the moment, but it is getting thinner every day, not sure how long I can hide it for.The rest of my hair is growing normally I still have to colour the grey roots every 4-6 weeks!

Comment by KarenGinny - Iowa, US on August 4, 2012 at 12:46pm

I feel like my hair loss has slowed down but not probably done. I haven't had the red itchy inflammation in my scalp in a while now, but it still is very dry and I use a medicated shampoo to help control that. My hair texture has changed somewhat thought, it used to be very curly and thick, but now is thinner and flatter and frizzy on the one side that has had more hair loss, but more normal on the other side. Very strange! I haven't lost any other body hair other than a patch on one arm. I wouldn't mind not having to shave my legs! My remaining hair seems to still growing at a normal pace. My scalp is strange in that I have a small strip of hair growing at the front hairline and temples and then the bald part starts and goes about 2 - 3 inches back. That is the hallmark of the "Frontal fibrosing" type of alopecia according to my doctor. Is the same with the rest of you? I'm not doing any treatment for it since my dr said it was unlikely to grow back. I guess I should at least be happy that I don't have Universalis and still have some hair left. I feel also like I have a secret to hide and don't want anyone to know about. My husband & kids are supportive, it's just when I'm out in public or with acquaintences who I haven't shared this with that I'm uneasy. I know people can probably see the bald shiny skin under my bangs but I don't know what to do about it other than wear a hat. I'm not really ready for a wig or partial wig, or head scarves. That would just call more attention to myself. I can wear a hat outside it it's windy or sunny, but inside it would just look weird! and this summer has been so hot that I sweat like crazy and my hair just looks a mess anyway!! I can't wait for fall and cooler temps!!

Comment by PamW San Diego, CA, USA on August 3, 2012 at 6:58pm

I hope he answers you. I started Plaquenil this morning. The derm made it sound like if you can get the inflammation under control you can prevent further hair loss. However, everything I read said that even if you could control the inflammation, the hair loss can continue. That doesn't actually make sense -- why take all the meds then? I would just like to hear from one doctor that it is possible to prevent hair loss. I am like you, I am in the best condition in my life, with the least stress. The only thing now that is causing stress is when I do my hair. I am hoping that one day I will get to look in the mirror again and not think about going bald. Even though I may not look different on the outside, I feel like I have a secret on the inside that keeps me from being like everyone else. I look at everybody's hairline now. No one is safe.

Comment by Heidi Short UK on August 3, 2012 at 6:44pm

Pam to answer your question, the only changes to my skin is the lack of hair! I haven't needed to remove any hair from my legs since xmas, so there are some benifits! I still need to do under my arms though! My head and my hands seem to be hypersensitive, If I knock or catch them it is very painfull, but other than that I don't get an overly itchy scalp or pain any where, thats the ridiculous thing I am probably the fittest I've ever been since a teenager, I'm at the least stressfull time of my life and now my hair is falling ou,how does that work!
Hope the hair styling goes well next Thursday.
Sandy my doctor said to me that it will burn itself out but he didn't give me any exact time scale just a few years. I'm sending a letter to a doctor who is reseaching FFA so hopefully he might come back with something more positive,I'll keep you all posted!

Comment by PamW San Diego, CA, USA on August 2, 2012 at 6:06pm

My derm called and the results of my baseline eye test are normal so I am good to go with starting plaquenil. She is not crazy about taking doxy, plaquenil and actos all at the same time.She said right now the gold standard for treating the diseasenis plaquenil. She thought actos was kind of experimental. She said that maybe in ten years it will be what is prescribed, but there just isn't evidence yet. So doxy and plaquenil it is.

Wiglet purchase and customizing is scheduled for next Thursday. Taking a few friends with me.

I have a new question for the club: Did anybody notice changes to their skin?

Pam


I

Comment by Heidi Short UK on August 2, 2012 at 5:30pm

You did make me giggle Pam! When I went to try some wigs on, I just felt exactly the same as you I've got a wig on my head!! i did think the fringe with side bits could work though, using a head band to cover the join. I think we must all be about the same stage of hair loss as I'm still not ready to take the plunge. i do wear hats and hair bands when its windy but most people don't know anything is wrong!

Comment by PamW San Diego, CA, USA on August 1, 2012 at 6:40pm

I cannot believe that I typed "died" to match. I meant dyed to match. I have lost my mind. I did bring a friend (I picked my most honest one). My other friends would try to spare my feelings. She liked it and said the part looked realistic. I think it looks like I have a wig on my head, but the stylist promised to thin it out and she did say something about powder. I know once I wear it and survive the scrutiny, I will be okay. Little kids and prbably parents wonn't notice, but my colleagues will. I don 't want people to be horrified or feel sorry for me.

Comment by PamW San Diego, CA, USA on August 1, 2012 at 5:48pm

Sorrybabout all my typos. I am on a tablet and my fingers are just too big.

Comment by PamW San Diego, CA, USA on August 1, 2012 at 5:47pm

I went to a wig stylist yesterday. She showed me something called a topper which will give me bangs and fill in some of my blanks at the temple area. The piece she showed me is also synthetic. Basically, if I understood correctly, the only real advantage of human hair is thatnit can be died to match. If you find a good match with synthetic, human hair may not be necessary. she also told me that human hair is heavier and is harder to care for. I also read that human hair frizzes in the humidity. I felt human and I felt synthetic. There was not much of a difference. The only thing I didn't like was that the piece looked a little shiney. She said that she could get the sheen down. She also will thin it so that it doesn't look to poofy. The stylist is a caner survivor and knows about wearing wigs. Now I have a decision to make. Right now I am the only one who notices the thinning. I just don't know how fast and how much I will lose. I am thinking of returning to school wearing the piece, hoping that the change in my appearance will be less noticeable.
All opinions are welcome.

Comment by Heidi Short UK on August 1, 2012 at 5:36pm

Christine sorry I'm so long in getting back to you. I will be writing to Dr Harries at the weekend. I don't know how sucessful I'll be, but I can only try!

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