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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


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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!

Comment by Heidi Short UK on August 1, 2012 at 4:02pm

Haven't you all been busy! my computer has been playing up over the past few days so I've just got back on and there has been loads of interesting chat!!It's so nice talking to people who know exactly how your feeling. I went to a couple of wig shops the other day, but they weren't great, but I did quite like the idea of having a fringe and side bits. They only had synthetic hair but I know you can get real hair ones. I think as it gets worse I think I will use a hair band but I'm not dismissing the wig bits yet. I might use a fringe or bangs as you call them with a hair band to cover the join!

Comment by PamW San Diego, CA, USA on July 31, 2012 at 8:55am

Wow. I never heard that before. I am off to the wig store today with 2 of my friends. I want to see what my options are so that I know how much to fight with meds. Then to the eye doctor so that my derm has a baseline before I begin Plaquenil. FFA is becoming a fullmtime job. Anybody hsve suggestions for eyebrows?

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