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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.

Comment by CJ- Christine from Ottawa Canada on August 13, 2012 at 11:57am

HI all,
I went to CARF this weekend and it was good. I'm a bit numb.. its hard to be in denial when you are surrounded by others with your disease. There were lots of women with FFA,a nd the news was that the docs are seeing more and more of us . they wonder if there is an environmental link... it seems more prevalent in some parts of the world than others.. or maybe people in other parts simply aren't bothered as much as we are.. who knows
It also seemed to me that there are two categories of people with FFA - those who are trying to fight it with whatever they can ,and those who have either given up and have had their disease 'burn itself out' - their words, not mine- and refuse to take anymore medications for it, except those to comfort the pain or itch. most of those are using hairpieces or wigs. there is alot of emotion around this disease,and many are finding help in local support groups that are cropping up. two others and I are starting up a group in Canada at the Skin Matters conference in Toronto in October, where we'll invite hair expert Dr. Jeff Donovan to speak to us about research as well.
one woma talked about doing a medicine life chart... documenting all the medications she'd taken in her life. Others talked about diet and environment. The doctors there hypothesized that there might be some environmental trigger, but also a genetic factor There are those who think that the way to find better treatment or a cure is via finding what 'causes' it and others who look to the biochemical processes involved and studying them to find a cure or treatments.
I left with mixed feelings. There are others like me, and there are some very dedicated people working on it, but I didn't sense we were anywhere close to finding a cure. There was laughter and tears and sometimes both at once. it was very good to be face to face with some lovely people.
I was also struck by how our experience is so similar to that of other patients with skin diseases.
I tried on a wig, I learned about hair pieces and weaves and met a woman who makes her own wigs - truly cool... I wasn't really ready to face that stuff yet... I'm a bit numb today.
that's my initial report. I'm sure I'll dredge up more int he coming days.

Comment by PamW San Diego, CA, USA on August 12, 2012 at 9:19pm

Happy Sunday. I was wondering if anyone went to the CARF Conference this weekend and if anyone has any news to to report?

Carol Sue, I have a question about Actos. I know you said that you came off because of side effects, but did you think it helped you?

Comment by PamW San Diego, CA, USA on August 9, 2012 at 12:12pm

Here is a link for the product. My stylist is ordering it from this website and then we are going to cut and trim it so that it fits my haircut and hair. It doesn't feel any different than wearing a head band. Watch the product video.

http://www.wigs.com/product_info.php?products_id=4506

Comment by PamW San Diego, CA, USA on August 8, 2012 at 10:21pm

Sandy, I added my profile pic (before FFA). Anyway, before I even had a diagnosis my friend recommended Bosley Shampoo. I bought a trial size to try it and it really does add volume and body to my hair. It is very expensive so I bought a trial 30-day size first at a local spa/salon. I liked it and found it on Amazon at a much better price. They have a formula for color treated and non-color treated. I will post wiglet pics next week (after stitches come out from the skin cancer).

My friends who went with me today said that the wiglet is hardly detectable. I will know soon enough I guess. It gives me just enough volume at the temples and bang area where I am thinning. I don't want to wait for it to become an issue so I am taking care of business now.

Comment by PamW San Diego, CA, USA on August 8, 2012 at 5:27pm

Hi everyone. I went back to the wig stylistnand settled on bangs and fringe in human hair. I am going to go back to school wearing it so hopefully no one will even notice. The color had to be ordered for me and it will be cut and styled for my head. I will post a photo next week. I had a basal cell skin cancer removed earlier this week, so I am a bit of a mess. Stitches will be out on Tuesday. Thismhas been such a challenging week!

I thought the woman shown in the article was a model. I didn't think it was the actual patient.

My dermatologist is still thinking that she could save my hairline if shevcan control the inflammation. Everything I read says the hair loss can still happen even if they can control the inflammation. I am on Plaquenil and Doxy and see no difference. My scalp is still itchy. I am definitely more comfortable shampooing everyday, even though I know that it isn't good for your hair. Doc says it can take months for the drugs to get into your system. It seems as if I am the only one of us who is being treated with drugs. I will keep you posted on my wiglet progress.

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