Recently Diagnosed

Hi,
My name is Annie. I'm a 53-year-old woman from Springfield MO who was diagnosed with FFA a week ago. My dermatologist treated me like I was overreacting to female pattern hair loss until I made him stop & take a closer look. He'd never seen FFA before, & I honestly think he's out of his element trying to treat me. He put me on a topical steroid twice a day for 1 month, then two weeks off & 2 weeks on after that. He told me to schedule another appointment for 4 months. Does anyone know of anyone in my area that treats FFA? Has anyone had any success with treatments? I know I need to get on this as soon as possible.

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Permalink Reply by Debs on March 23, 2013 at 2:41pm

Annie, I have FFA too.
We have a group for this specific type of hair loss on this forum
'FRONTAL FIBROSING ALOPECIA ' group

If you go to the very top of this page, CLICK on groups and you can access use from there, we are 49 women in the States, UK, Germany, Iceland and Portugal, I am sure one of the ladies in the States will be able to help you. A topical steroid does not work on FFA. The drug we are mostly using is hydroxychloroquine sulphate - a tablet you take twice a day to reduce inflammation in autoimmune conditions. This is a scarring alopecia so once gone the hair does not grow back, please check out our group and we can help you get information. Debs

Permalink Reply by Amy on November 23, 2013 at 8:54pm

Hi Annie.  We are also from Springfield MO!  My daughter was recently diagnosed with diffuse AA.  Do you know of any resources/support in this area?

Permalink Reply by Mary on November 24, 2013 at 2:47pm

I am 67 and was diagnosed with FFA in September.  My dermatologist told me that it is rare and he has seen only about 5 or 6 cases of it.  He put me on doxycycline and said I will be on it at least 6-8 months.  If that doesn't help, he will put me on an antimalalria drug.  He says no one knows what causes it or how to cure it.  I am not adjusting very well to this diagnosis but so far my doctor has been supportive.

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