Alopecia World
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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 Airam-FFA on
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I went for Acupuncture and Chinese Herbs with the aim of trying to de-stress and balance my Ying and Yang.
I saw my GP again and asked to be referred for a second opinion - again there will be more waiting - stressy! Had my GP practice known about or recognised my condition I might not have lost so much of my hair line. They don't seem to appreciate that time is of the essence.
Apparently only 1 in 10,000 get FFA so most GPs don't know about it and hence the delay in getting treatment. :( -
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Glad you guys are keeping the dialog going. I am not writing so much but sure value being part of discussion. Working really hard on stress but hard as the hair loss is the root of my stress right now. Doing acupuncture, herbs, etc. Getting second opinion on Tuesday my self. Take care.
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Apparently hormones does play a part, I was told that my IVF could have probably triggered this off. Before that my hormone levels were low.
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Hormones and stress - I hope the research will soon find the causes and help people to hang onto their hair.x
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Hi!
I agree with you.
I think that changes in hormonal level on the background of IVF can significantly affect the condition of hair, skin, and nails.
I advise you to talk with your doctor about possible side effects after IVF. And it is also very important to carefully choose the clinic where IVF is performed, to consult with your doctor, to study the side effects that the drugs you are taking may cause. All of these factors play a decisive role and can affect the condition of your body.
Good luck! -
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I hope all the researchers across the world share their findings and help us to get rid of this crappy condition. x
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Permalink Reply by Isabel on
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Hi!
In my case, and my mother's, I am positive that stress was the triggering cause for the disease. The hormonal factor may have come later, affected by FFA itself, as my periods were always regular like a swiss watch (28 days apart without any kind of treatment or pill), but have since been shortened to about 24 days.
Something which is curious, and in the midst of all this, rather positive, is that I always had polen allergies in the Spring, but now I don't, since I was diagnosed.
I think the best treatment for us is trying to keep serenity about us, even though that really is very hard.
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Permalink Reply by star on
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Hi all...
sorry to keep banging on about this but i'd be really interested what blood type you all are?
In brief i've not had the easiest of lives...but my FFA came about when i was relatively stress free, compared to my past!!
Which leads me to believe wether certain types (blood type ) are pre disposed to this condition?
There must be something that binds us all....i'd be fascinated if this was the factor e.g rhesus negative blood type..
Love and light to you all xxx
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Hi, my blood type is A negative. Seems like others have meantioned their Ffa started in 2011. I believe that is when mine started. Just a thought.... I was under alot of stress right at a time I stopped birth control. This sucks!
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