Comment

Comment by Kath UK on March 25, 2013 at 6:22pm

Rebecca, that was very interesting about your specialist in Berlin saying he reckoned he got a 50% success rate with plaquenil. My dermatologist didn't give me any indication of success rate, she just said it would help the inflamation so it's good to get some idea of the possibility of success, even if it is only one doctor's opinion.
It's worrying that your local dermatologist may have given you the steroid shots in what was apparently the wrong place because as a patient you have to trust that your doctor is doing the right thing for you.
I hope your next lot of steroid injections work for you.

Comment by Simone NJ USA on March 25, 2013 at 6:09pm

Thank you Rebecca for sharing..hope your forehead heals very soon...xx

Comment by Heidi Short UK on March 25, 2013 at 12:47pm

Hi everyone, you have all been so busy its hard to keep up with all the conversations!
Sandy i have registered to the survey, I don't know if they will take me as I'm in the uk, but I'm sure my doctors will confirm the diagnosis!
Debs could I complete one of Dr Harries surveys as I'm not registered with him although I have had contact with him?
Its good to know there is some interest in this disease!

Comment by PJ - MN, USA on March 24, 2013 at 4:47pm

You can go under the settings of your profile and add on your location after your name, then save your changes. Then you don't need to type it in each time.

Comment by Simone NJ USA on March 24, 2013 at 1:35pm

Hi Celia:

I live in New Jersey, USA

Comment by Liz on March 24, 2013 at 1:02pm

Brighton Uk :o) xx

Comment by PamW San Diego, CA, USA on March 24, 2013 at 1:01pm

San Diego, CA.

Comment by Alice on March 24, 2013 at 10:57am

Thank you for posting the link to the FFA study in NC. I asked my derm for a referral there on Friday, before I knew about the study, and just filled out the participation form online. Will keep you all posted on results.

Comment by Simone NJ USA on March 24, 2013 at 8:17am

Thanks for the info, AC!! Hope you make the right decisions regarding treatment. It's a hard decision considering there are no proven results...I, myself have just decided to try treatment after many, many months of resisting. It was not an easy one and it is comforting there are more doctors willing to do research for FFA...we all pray for a solution one day soon...

Comment by Debs on March 24, 2013 at 3:34am

It is at least heartening to know that there are several research studies happening on FFA. With this group having members in several countries we are well placed to learn of any new developments too.

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