Comment

Comment by Caro UK on March 26, 2013 at 5:00pm

Rebecca I've just read your post. Very sorry to learn of your bad experience with the steroid injections. As your specialist said, once hair follicles have been scarred there is no possibility of hair regrowth from these areas. All that can be done is to try to reduce any inflammation in the remaining hair follicles. I am taking Planquenil and while I know that it may not work, I am encouraged by the knowledge that there is a 50% sucess rate. Rebecca I do hope your skin recovers in time and all the best for your further treatment.

Comment by Debs on March 26, 2013 at 6:02am

Rebecca, so sorry you have been through all those shots for no reason, very good news though that the plaqeunil has a 50% success rate and also that your derm in Berlin says that steroids (in the right place) can help. I think you should take photos of your scalp where this doctor injected in error and see if you can get some compensation from the health authority. Good luck with your treatment from now on.

Comment by Debs on March 26, 2013 at 5:59am

Heidi, as you have been diagnosed with FFA by a doctor in the UK I would suggest you ring Dr Harries receptionist to get a message to him and ask if you can do the study, if you give her your details she can action this and pop a survey in the post to you if he agrees 0161 206 1012.

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.

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