Comment

Comment by Rita - Canada on July 8, 2013 at 5:33pm

Celia, she said the same thing roughly 50% success but didn't look convincing. I think we're guinea pigs but then no meaningful research has been done and so the derms can only guess at what to suggest and most likely tend to exaggerate the positive outcome. Perhaps our own research will point out the factors we all have in common. We'd have to come up with a comprehensive questionaire. Those that were comfortable with taking part may well learn what that something is which the researchers have not found. Yes I know it's a pipe dream as even if we found the common element assuming it's not inflammation,the question remains-how to fix it.

Comment by Kath UK on July 8, 2013 at 4:58pm

Celia - couldn't agree more with what you're saying. Personally I think the bottom line is that none of the specialists really have much idea what causes FFA and what will cure it and they're just trying out anything that they think might work.
I asked my dermatologist what sort of success rate she had with Hydroxychloroquine because I was reluctant to take it. I felt her reply was a bit vague - she said she had 'something over 50% success'.
As I understand it the Clobetasol is simply to reduce inflammation and the theory is that if there's no inflammation then the hair follicles won't be destroyed. Well I've been using Clobetasol (Deermovate) for over three years and my hair is still disappearing and the inflammation is still there. (Sigh!)

Comment by Celia on July 8, 2013 at 4:18pm

Rita - you said you were told to apply Clob. and take Doxy. Have you asked your derm about the stats regarding the success rate on this regime ? I wonder if they have any ?
Karen you are absolutely right ! What is it with these experts - that they cannot understand some fairly fundamental facts ?
I was told by Dr Harries - that my FFA may be 'different' to another person's, Oh dear. So - totally confused !
I think it is about time that we acquaint the experts with some facts that we 'sufferers' have gathered ! x

Comment by KarenGinny - Iowa, US on July 8, 2013 at 11:13am

I think it's funny how every dermatologist has different opinions on this disease. The new derm I went to said that FFA mostly affects women of African American descent, but I see a lot of caucasian women on this website and I'm about as white as you can get! I'm now 48 and this started for me about 3 years ago when I was 45, and I'm still not in menopause yet. I don't see how affluence would have any affect on this other than that poorer women who don't have health insurance may not go to the doctor and get diagnosed as often. None of them are on the same page! Very frustrating!

Comment by Rita - Canada on July 8, 2013 at 10:23am

Yes my derm said white, affluent, postmenopausal - take this doxycycline & apply the topical clobetasol and all will be good. The problem is no one has found an answer to this affliction so why change derms.

Comment by Celia on July 8, 2013 at 10:16am

Hi Christiekd - you are totally right !
The surprising thing is that derms - well some of them still believe that this is a menopausal prob. And some derms even said it was only affecting white females. Simply not true ! We have to put some kind of faith in those guys who are involved in research. I feel so very sorry that some of you of child bearing age who wish to start/continue to have a family are affected in this way. I know that Dr harries has asked Jules for some ideas as to where he might focus in the new research.
Had a friend and her husband round last evening - I think my hair prob is still hideable but how I hate it !
We have a friend coming over this aft from Dubai where we used to live. His daughter aged 34 has just lost the battle with breast cancer - he and his second wife and family came over for the funeral.
I should stop whingeing and get on with it. So many of you are so inspiring in your outlook and that is great and we need to keep going with that mindset.
My eyelashes are disappearing. None on the lower lids. Me me me !
I do hope I haven't gone on for too long - but sometimes it is good to get it off your chest ! x

Comment by Simone NJ USA on July 8, 2013 at 8:29am

Thanks Debs...

Comment by christiekd on July 8, 2013 at 8:13am

I wanted to let you know that more women who are premenopausal are getting this. I was 40 when mine started, and I am not even perimenopausal. I am the youngest FFA person that my doctor has seen. So the belief that this disease is for postmenopausal women is not true anymore.

Also, I have had steroid shots a couple of different times in my journey. Both times I had lines on my head and indentations. While it takes a long time to fill in - maybe 6 months or more - it will eventually. But you have to stop having the shots for them to fill in to normal.

Comment by Debs on July 8, 2013 at 3:54am

With essential oils you use a carrier oil, and use a ratio of 10ml carrier oil with 5/6 drops of essentail oils. I use 4 drops turmeric and 2 drops lavender. There are other essential oils that are recommended for other types of alopecia but I wanted to get more turmeric into my body and apply it topically to my scalp because it is proven to stop inflammation in other autoimmune conditions and if you stop the inflammation in FFA we dont lose our hair. Turmeric is proven to be more effective the steroids in other autoimmune conditions. Lavendar is antibacterial.

Comment by Rita - Canada on July 7, 2013 at 5:43pm

I recently read an article by Dr.Maria Hordinsky,derm fr. University of Minesota: http://consults.blogs.nytimes.com/2010/08/26/can-stress-cause-the-h.... Of course the FFA may not fit into what the dr. suspects and that is some connection with the nervous system. The use of botox +/or Capsaicin were mentioned. I too, had 2 trauma type stressors but am unsure if this contributed. I had wondered also if a medication for B/P I've taken for a few yrs now could be implicated. We could go mad trying to be our own researcher but not much seems to be going on that I can find. It appears more women who are not postmenopausal are also afflicted but we have no statistics on this. My dr only told me it affects postmenopausal women.

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