Comment

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

Comment by CJ- Christine from Ottawa Canada on August 14, 2012 at 12:57pm

just a quick response to all the comments... celia- some people are also taking celcept ( sp?) and doxy is short for doxycycline - usually taken in combo with plaquenil. Most are also on some topical or combo of topicals, like clobetasol and protopic.
Karen - the docs there were starting to imply that FFA and cicatrical alopecias may not be auto-immune diseases as originally thought. I know that arthritis is inflammation and FFA is caused by inflammation - so inflammation may be the link. I think its worth you discussing all the pieces with your doctor though.
Chris - burn out here seemed to refer to the diseases just stopping - for some when they had lost 70% and for others when they had lost less than that. I don't know that there was anyone there who had minimal hair loss, had taken no meds and had it burn out with minimal hair hair loss:-( Dr barbosa was there and she seems right on the ball.. you are lucky to be seeing her.
Pam - no - I couldn't really see anyone who radiantly , confidently said they were winning the battle. darn. there were people who had come to a place of acceptance and they were OK with having the disease.. and many of those had found wigs or whatever to cover their bald spots. I too wonder the same thing - is it worth fighting something that will win in the end anyway, and put our bodies at risk for all kinds of other nonsense in the process.
I'm feeling really low these days, quite unsure of which direction to go. Plaquenil makes me nauseous and gives me diarhea - not sure I want to go to the next level. I di get my shingles vaccine yesterday just in case I do go on immuno-suppressants like celcept though. Sigh.

Comment by KarenGinny - Iowa, US on August 14, 2012 at 10:06am

My thanks also to CJ. It's nice to know that people are aware of it and trying to figure out a cause and hopefully a cure. I think mine is related to my auto-immune system being out of whack. I've also had symptoms of arthritis - pain and swelling in my hands and feet, and an increased ANA count in bloodwork, which has been that way for a year now. I go to see a rheumatologist in a week and hope to find out more about that.

Comment by Heidi Short UK on August 14, 2012 at 3:57am

Thanks CJ, for your summary of the conference, I was really looking forward to your feed back. I know you didn't come away with a miracle cure but I get some satisfaction that the info we have got is up to date. My worry is in years to come someone will say if only you had done that you would still have a full head of hair! Within your job role you are in a unique position from the rest of our group as you have a personel knowedge of what is out there and the organisations that deal with hair loss, we are lucky that you have joined our select group!!! Thankyou x

Comment by ChrisC. Chicago, IL on August 14, 2012 at 12:36am

Thanks for posting your take away from the CARF conference, CJ. It sounds like alot of information with little in the way of conclusive evidence that there is an obvious direction for treatment. . . what constitutes "burn-out" I wonder? I'm really interested in knowing if this would be a time frame or just when the hair in the frontal region is just, gulp, gone. I am going to see Dr. Victoria Barbosa in late September. I believe that she was participating in the conference talking about the Chicago support group—did you see her? Anyway. . . thanks again for your post.

Comment by PamW San Diego, CA, USA on August 14, 2012 at 12:24am

Thank you, CJ, for sharing your experiences. I was really interested in your comments about those who are fighting and those who have given up. Did you meet anyone who is actually winning their battle? I am wondering if it is even worth fighting FFA with drugs if the hair loss will continue.

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