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Comment by CJ- Christine from Ottawa Canada on July 29, 2012 at 3:06pm

Comment by CJ- Christine from Ottawa Canada on July 29, 2012 at 12:38pm

Pam _ I'm about to get off plaquenil, because the stomach side effects are not sustainable... I'm not sure about the next systemic-- also bad side effects. On scalp itching.. I have no idea - the clobetasol lotion helps me. the itching is indeed crazy making as I feel that if I scratch or rub, I'm losing another hair. I've been told that isn't the case, but you can't help feeling like it is anyway.
Heidi - THAT is a brilliant idea. The Canadian Skin Patient Alliance ( www.canadianskin.ca)doesn't do anything like that currently, but perhaps its something CARF could take on, and if not CARF, then I'm thinking we might interest a number of Cicatricial Alopecia researchers to take this on in collaboration with a few of us.... how hard could it be?. Perhaps a research grant could fund the setting up of a self-reporting data base - online... it could be a model for all kinds of rare skin diseases, where treatment paradigms vary. We could launch it on facebook and create a website for it... By we, I mean a core group of FFA patients... or CARF.
With your permission, I'll float the idea when I'm at the conference. I'm connected with two of the Cicatricial Alopecia specialists in Canada. I expect each of us knows one of the experts in their country.IF we all think this is worthwhile we might each try and talk with our local expert and ask what we might include in such a registry that would be helpful.

ALL THAT SAID, I expect that optimal treatment for FFA is going to vary from person to person. From my work in the area of skin diseases, I've learned that there is no one 'best' medication for everyone with a given disease. Presumably the treatments that are currently being used for FFA have worked for some people. I think that the more we can find what is working for MOST people most of the time.. maybe it leads to greater understanding and better more targeted treatments.
I could go on and on.. what do the rest of you think?
Christine

Comment by PamW San Diego, CA, USA on July 29, 2012 at 11:49am

Plaquenil is an oral medication. My derm wants to start that, but I need to have an eye check first because one of the side effects (remote) is eye damage. Can anyone give me advice about scalp itching. Going out of what is left of my mind.

Comment by Heidi Short UK on July 29, 2012 at 4:08am

Sorry Christine I'm now on Betnovate which is a milder form of dermovate!!

Comment by Heidi Short UK on July 29, 2012 at 4:04am

Hi Christine I would love to come to Boston but I'm in England! but it will be great having an 'insider' going who can collect as much information and keep us infomed!!! would't it be great to have some really poitive news! I don't know if within your job role of running the skin disease organisation, if you know of any data base that we could put all our individual information on so there might be a pattern or something that could give us a clue to why this is happening or what can be done!!Back to your medication I haven't heard of plaquenil is it a type of steroid lotion? I'm now on dermovate which is milder than Betnovate that I was on.

Comment by CJ- Christine from Ottawa Canada on July 28, 2012 at 4:44pm

HI all,
I'm also an FFA'er. I was diagnosed this spring. Ironically I run a national organization for people with skin diseases and I didn't twig onto the fact that I had this disease until it had progressed to 2 cm loss, no sideburns and almost no eyebrows. Go figure. Denial is a powerful force. I have a few other skin conditions, all connected with auto - immune stuff, but I'll confess this diagnosis has hit me hard. I've registered to go to the CARF conference in Boston in a few weeks, just so I can learn more. reading all the posts here and in other groups, the whole thing seems pretty hopeless sometimes.
I find it interesting that this may be not as rare as previously thought. It may be a question of raising awareness in our communities- getting people to see their doctors - to register in. Once drug companies see that there is a larger 'market' for their products and doctors see that their work could affect more than a handful of people maybe research into FFA would take off...
just some wishful thinking...

I'm on the anti-malarials, and a trio of topicals but the plaquenil makes me sick to my stomach - persistent diarhea.. On the plus side I'm losing weight, but I do spend far too much time in the loo. I expect that I can't continue on this, and will discuss with my derm next week.

anyhow .. is anyone else coming to this conference in Boston?

Cheers, Christine

Comment by Heidi Short UK on July 26, 2012 at 1:24pm

I know how you feel! I keep trying to put it into perspective, I have a lovely family and friends who will love me with or without hair, and i'm thankful its me and not my daughter, I couldn't bear her having to deal with it, with her whole life ahead! Talking of acid, over the past few years I've had a problem when I eat acid thing such as grapes blueberries or too much sugary things, like chocolate!I get an itching along my salivary glands from the bottom of my ear along my jaw line. It is an uncontrolable itch which i find hard not to scratch and it gets so bad it swells up so I look like a hamster!! This can all happen when I'm asleep and i wake up with the swelling. I've had dye put into my salivary glands and xrays taken but there are no blokages and the ENT consultant couldn't tell me what it is. So i've put it down to another allergy!

Comment by PamW San Diego, CA, USA on July 25, 2012 at 7:54pm

Just came back from my GP who gave me a scrip for Actos, but I don't want to try it until I get the go ahead from my derm. You have reminded me that there are more important things than my hair. I have been so consumed with myself, that I havevforgotten how lucky I am.

Comment by KarenGinny - Iowa, US on July 25, 2012 at 7:47pm

Pam, yes I've read about Lupus and they are some of the same symptoms so I have an appointment with a Rheumatologist to find out more. I also have thyroid problems and take synthroid for that. I had part of my thyroid removed about 7 yrs ago. Also have high blood pressure and am trying to lose weight through Weight Watchers. Lost 10 pounds so far but have more to go. With my feet hurting and swelling it's been hard to get much exercise. As if this is not enough, my 12 yr old son has moderate Autism and that takes up much of my time caring for him and my other son - 10 yrs old. I just can't afford to be falling apart quite yet!!! I'm hoping the Rheumatologist can help me figure out what's going on with me. I'm glad to know this group is here for support.

Comment by PamW San Diego, CA, USA on July 25, 2012 at 6:35pm

Very interesting. Did anyone mention Lupus to you? I have GERD, and must take meds to control my stomach acid. I have had acid reflux for years and wonder if that has somehoe affected how I metabolize. I am also interested in Actos. I only heard about one of you taking it and then stopping. Thanks so much for your help.

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