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Comment by CJ- Christine from Ottawa Canada on September 24, 2012 at 5:06pm

the device was likely a dermatoscope - essentially a high powered magnifier...
I'm in the middle of menopause. My scalp whcih was only a bit red 6 months ago and just a wee bit itchy is now really painfully sore and itchy. I've lost more hair....

I met some people at the Boston conference who lost alot of hair before the disease 'burned out' . If it is associated with menopause or hormones, I wonder if using HRT could help? I'm looking into that. They've cleared HRT now.
I don't smoke, drink wine almost daily am 5'1 and 145 pounds. My extra weight is most certainly from the wine. I work too much, live in the city, don't drink diet sodas, but used to.
I also have eczema, some small patches of psoriasis and worst of all, lichen sclerosis and atrophy--- all somewhat immune - inflammatory diseases. I should try the anti- inflammation diet.. but I can't bring myself to try another diet. I'm hoping to learn more at the conference next month.

C

Comment by MairiM on September 24, 2012 at 4:02pm

Today I went to Dundee for an appointment at Fernbrae Hospital. The dermatologist there said that FFA is now quite common. He has had many cases - in the majority of these it has burned out within 2 years and most of his patients have not needed cosmetic enhancements such as wigs. He is against steroid injections - said that, while they may give the impression of being successful in some cases, it is likely that the treatment has coincided with the disease burnout. He has prescribed only Clobetasol for me, which most of you already have. He looked at my scalp with a small device - wish I had asked what it was - and said the evidence he saw of inflammation led him to think that my disease was beginning to burn out. He has given me a note for my GP to prescribe Clarelux shampoo(clobetasol) or Bettamousse. He said that these are not readily available in the UK, which is why he has given him a choice. I have to return to see him in two months. I do not know yet what the consultation cost - they will send a bill. You can be referred to him by your GP, but medecines will be at the NHS rate since he notifies the GP of what to prescribe (free in Scotland). His name is Dr Colin Fleming, Consultant Dermatologist and Mohs Micrographic Surgeon, BSc, Mb ChB FRCP. He was incredibly nice and gave me such confidence, which I hope is not misplaced! :-( I had printed out a lot of the comments from our forum and he very patiently read them. If any of you fancy going to see him, Dundee is on the main rail line between London and Aberdeen. The hospital is Fernbrae, 329 Perth Road, Dundee.

Comment by MairiM on September 19, 2012 at 5:36pm

Comment by PamW San Diego, CA, USA on September 18, 2012 at 7:32am

My derm knew it was FFA as soon as I told her about the eyebrows. She called it Post-Menopausal Front Fibrosing Alopecia - and doctors do believe that there is a hormonal trigger. Chris, I had a hysterectomy but my ovaries were left. That's why I was never sure when menopause started -- but I have to say that my hot flashes were really, really bad this year.
Also, every one of my siblings and my parents have or had autoimmune diseases - diabetes, Chron's, and Pemphigus. I thought I was going to be lucky. I am an ex-smoker but I don't really drink - only an occassional glass of wine.

Comment by Debs on September 18, 2012 at 2:43am

Hi Ladies, I am 49. I noticed that my eyebrows were falling out (and not growing back) about 18 months ago. I had my eyebrows tattoed last year, I still have a little eyebrow hair but not much. I have not gone through the menopause yet, however I only menstruate about 3 times a year so I am heading that way. I have not heard of anybody having FFA that is in their 20s or 30s... so maybe it is linked to hormones changing as we age..

Comment by ChrisC. Chicago, IL on September 18, 2012 at 12:34am

Hi all,
I'm 57. . . started noticing the lack of eyebrows two years ago. Had a hysterectomy when I was 46. . . I had my ovaries out as well. I was wondering if that had anything to do with it, but some of us are just going through menopause so that's not part of the equation. hmmmm. . . Live in an urban area (Chicago), don't smoke, drink in moderation . . . maybe it is all the diet soda I consumed over the years!? :-) There is a history of some conditions in my family that are thought to be autoimmune . . . Vitiligo, ankylosing spondylitis, eczema. Not sure if that is related, but wonder.

Comment by CJ- Christine from Ottawa Canada on September 17, 2012 at 10:26pm

I am 52.. literally going through menopause at the moment. hot flashes.. missing periods etc.. cranky too.

Comment by PamW San Diego, CA, USA on September 17, 2012 at 7:50pm

I am 55 and noticed my eyebrows and hair loss in March of this year. I got the official diagnosis in July. I don't really know when my menopause started - it seems like forever.

Comment by PamW San Diego, CA, USA on September 17, 2012 at 7:48pm

Comment by PamW San Diego, CA, USA on September 17, 2012 at 7:48pm

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