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Possible causes?
Hi All
I'm Lara, 38 years old and I was diagnosed with FFA in September this year after noticing what appeared to be male pattern baldness starting around 8 months ago.
My GP got the diagnosis wrong which led to a short delay in diagnosis but reading up on FFA I suspect that the delay won't mean anything given the lack of a definitive treatment anyway.
My derm started me on lymecycline and dermovate. I briefly tried Hydroxychloroquine 200mg a day increasing to 400mg a day but got a rash and blurred vision so have stopped that again for now. I was only on it for about 3 weeks anyway.
I have also started the AIP protocol and have been on that for about 5 weeks.
So far the hair loss appears to be worsening despite the above and I am due a biopsy in a couple of weeks.
Reading all your posts, the studies and thinking back on what I may have done to cause this I have come up with the following:
1. For about 7 years I used micronised benzoyl peroxide for acne. There seems to be a suggestion out there that modern cosmetics and micronised particles especially may be a factor.
2. I used factor 70 sunblock daily for about 4 years along with intermittent topical isotretin for acne. Sunblock also appears to be a suspect in this crappy disease.
3. I had a hysterectomy (ovaries have stayed)3 years ago for suspected adenomyosis (which histology then showed I didn't have). Wish I'd never had it done but on the plus side I non longer pass out with pain each month. I was told that it would bring on the menopause 2 years earlier but as we all menopause at 59 ish I figured that would be fine. My oestrogen is low apparently though so that might feed into the FFA too.
4. I used steamrooms on average weekly for the acne.
5. I drank a lot of coffee - not sure if anyone else is a caffeine hound. I have switched to red bush tea which just tastes like a cup of sadness!
6. I'm a stress head. I know autoimmune conditions can be worsened by stress so I should try to do something about that however the universe in it's a**hole wisdom decided that my dear mother should be diagnosed with a bad inoperable cancer the day after I was diagnosed with FFA so stress control is unlikely to be coming to me anytime soon. The stress might also skew my response to treatment and dietary changes so my progress, or lack of,may not be representative.
I thought I would put down the things that might have caused my FFA in case we share any common elements that might help narrow down what the hell is going on here.
I've not posted earlier but have found the info here really helpful so thank you.
Replies to This Discussion
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Permalink Reply by star on
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I'm still convinced it was the botox that started it off.....not too say it was the over riding factor. But the timing was a bit coincidental .....
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Permalink Reply by Lara79 on
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Now that's interesting - I had Botox about 3 years ago when I was a bridesmaid. My eyebrows would have started going a few months later. I should have stuck with the wrinkles!
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You're the first person I'v heard say this, even though I've wondered about it myself...interesting. Have you stopped using botox?
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Permalink Reply by DragonandFox on
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I never used Botox and I have FFA. From what I know, Botox has nothing to do with FFA
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I am seeing Christos T on Monday to give a sample. Thank you for altering me to this!
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Glad you sorted it Vicki. I saw the Derm today about the laser and I am starting 3-4 weeks of a trial of laser as he can't see why it wouldn't work. He has success with regular lichen planus. My biopsy came back confirming scarring alopecia but they can't differentiate between LPP or FFA.
Interestingly he made an analogy that the inflammation is like a car rolling down a hill. Putting a brick in front of the wheel of a fast moving car will do nothing but if you put it in front of a stationary car it stops it moving in the first place. His point was if you can hit the inflammation hard enough to squash it right down it is then a lot easier to keep it at bay with the milder treatments like topical dermovate. I'll keep you posted about whether my FFA gets shut down in 4 weeks or not! -
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This sounds fascinating - do you mind giving me the name of your Dermatologist? My biopsy came back with suggestions of LP but then my derm said he couldnt see any inflammation on my skin. I then said but surely that is what the biopsy is for, so you can see what is UNDER the skin and the clinician can see something! I dont have red or pink skin but the hair is falling out, receding, it itches all over (including my eyebrows), my scalp burns and feels bruised. Also I have hairloss elsewhere. The dermatologist simply couldn't help me and all the vitamin injections, scalp solutions etc didnt help at all.
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My inflammation is minimal too but I can see hyperkeratosis and I've got two chunky scarred areas with no hair follicles left.
I'll PM the derm details. He seemed more knowledgable about treatment options than the other 3 I've seen so I remain tentatively hopeful but we'll see as I have to be realistic. -
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