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Comment by ChrisC. Chicago, IL on August 23, 2012 at 11:54pm

Hi Pam, thought I'd mention that I similarly have been thinning on top. There is a spot to the right of my part that is quite thin. . . so far I can cover with the way I brush my hair. I guess that there has been a general all over thinning. I set my hair on hot rollers almost daily and used to have two full rollers on either side of my head. . . and now the hair fits easily in just one roller per side. . . sigh!!

I went to a hair specialist to get information and she showed me something very similar to what you are wearing in the picture. However she was thinking that I should consider a full wig when I'm ready so blending is not a problem and for ease of use. I'm sorry but I can't imagine that yet.I have another appointment with another hair specialist in mid-September that does hand-tied hair pieces—we'll see what he recommends. . . as well as an appointment with Dr. Barbosa to get all the facts that I can. Will keep you all posted.

I continue with the Finestride, Minoxodil and Clobeteso Propionate. . . not sure how long I should continue with the steroid drops though. . . it does thin the skin. I want to keep the inflammation down as much as possible.

Comment by PamW San Diego, CA, USA on August 23, 2012 at 6:07pm

Hi, friends. I went to work for a few hours a day and have seen many of my colleagues. Most just said hi and didn't even notice. One said that she liked my hair. No one has noticed. The only thing is that by the end of the day, I cannot wait to get it off. It feels like you are wearing a hat all day.

I am going to the derm later this afternoon for a check up. I was also referred to a hair specialist, but I am waiting to be able to make the appointment because paperwork has to go in.

I have a question -- most of the real loss has been at my temples and bang area. However, I am noticing thinning in the center part. Has anyone experienced this? I am just hoping that I am not going to get more bad news this afternoon.

Thanks for any info you can give me.

Comment by Heidi Short UK on August 17, 2012 at 8:39am

Pam it looks great! I went on the internet and ordered a small real hair fringe with side bits. It was a cheap one from amazon £15.99, my daughter who is a hairdresser is going to colour it to match mine. I thought I would try it, although I don't need it now I want to be prepared! I'm also using it to experiment, if I need a larger one or could I adapt it my self etc. My daughter always wears clip in hair extentions so she is familiar with how they work etc. Once I get it sorted I will also put a photo up.

Comment by PamW San Diego, CA, USA on August 16, 2012 at 8:26pm

I didn't answer your questions. No you can't sleep in it. It clips onto your head and I would think that it wouldn't be good for your scalp to sleep with it. It takes two minutes to put it on. Remember the first few times you put contact lenses in? It took forever, and then you get to be a pro. I just give it a comb and mostly use my hands to smooth things around.

Comment by PamW San Diego, CA, USA on August 16, 2012 at 8:20pm

Oh, man! I can't believe I had the nerve to post that photo -- but I wanted you to see. It is a really good color match so when the wind blows you mostly see my bio hair. I think that if you looked at me closely you would know it is a piece because of the part -- it is just so small. My bio part is wider. Also the crown part is flat -- I don't have volume. Now, having said that you'd have to be staring at me to tell. For Open House when parents are staring at me I will put a head band on or something to break up the scalp line. Does that make sense? The gal where I purchased this has a website and she sells to people all over the country. She is a wig wearer herself and has many videos that are so instructional as part of her website. Her business is Patti's Pearls. If you do a google search you will find her.

I don't think it is hard to look good now -- the test will come after it has been washed a few times. The piece is human hair - Remy hair (whatever that means).

I know I don't need anything now, but I just don't know what a month or two from now will bring and I am hoping just to fade into the background. If I wait, wearing a piece will be so noticeable. I don't know why that bothers me. People have false teeth, fake eyebrows, fake boobs -- but fake hair is not cool.

Comment by KarenGinny - Iowa, US on August 16, 2012 at 8:01pm

Pam, it looks really good! It's very hard to tell where the real hair ends and the hairpiece starts- I mean, I can't tell. I don't think anyone would know. It has nice color and natural looking highlights. How long can you wear it? could you sleep in it? I might need to go that route sometime in the future, and I hope mine looks as nice as yours!

Comment by PamW San Diego, CA, USA on August 16, 2012 at 6:34pm

DSCN3053.JPG

I had quite a few days - eyebrows and hair. I am uploading a photo. My family says they can't tell, but I guess the test will be when I am with friends and coworkers. Wish me luck.

Comment by CJ- Christine from Ottawa Canada on August 14, 2012 at 2:19pm

good idea about the tattoos. there were several folks there that had them. the best ones by far were the ones that had some whisping or texturing in them. I know where I live there is an artist who does it. that said my derm has dissuaded me from having it done yet as he is giving me injections in my eyebrows every two months and there is a small study where people actually had hair regrowth in the eyebrows ONLY from the injections

Comment by PamW San Diego, CA, USA on August 14, 2012 at 1:53pm

CJ - thanks again. I am wondering if the people who attended and the people we are communicating with are the ones who are not responding to treatment. Perhaps if you were responding you wouldn't be on the internet or at conferences looking for answers because you already have them.

For me, I need to do whatever I can to save my hair. If I can't take the drugs or tolerate the "cure", I will have to wave my white flag and give in.

I think we have to do things to make us feel good. I don't want people noticing my hair loss so I am going to wear something -- even though I don't need it, but preparing myself for the inevitable. It doesn't make me feel good to begin my day trying to fill in eyebrows that are barely there, so I am getting tattoos. It doesn't make me feel good to try to fluff up a receding hair line, so I will clip in my bangs and get on with it.
And, if it doesn't make me feel good to take Doxy and Plaquenil twice a day, I will stop.

I am mad as hell that I have to get a disease that no one knows what causes it or how to fix it. I am so grateful that I found the seven of you!

I am wondering if the inflammation could be caused by a variety of reasons, for some it is metabolic (which is why Actos works) or if it is auto-immune which is why Cellcept works.

Comment by PamW San Diego, CA, USA on August 14, 2012 at 1:43pm

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