Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Airam-FFA on
-
Hi Lara
Indeed, this a***hole life! My heart goes out to you and your family. I am new to this, but I am coming to the conclusion that stress is a major player for FFA. Something triggers the body to start killing off the hair follicles. I have always eaten healthily - loads of vegetables; not drank a great deal; not smoked. I have used sun creams (incl. the once a day type) and in face creams; I have been on the pill and HRT for several years and wondered if they have anything to do with FFA.
I am awake again in the early hours - not good when they say how important sleep is to help combat stress.
xOx -
-
-
Thank you for your kind words Airam x
It is a vicious circle that more you don't want to get stressed the more you seem to get stressed about it, the more you want to get sleep the harder it is to fall asleep!
I'm just coming round to the fact that I'm going to wig it up or get a bonded hair piece and just deal with it. For the moment I will plug on with the laser, got my third hit tomorrow so I will let you know if it does anything at all. -
-
-
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. :( -
-
-
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.
-
-
-
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.
-
-
-
Hormones and stress - I hope the research will soon find the causes and help people to hang onto their hair.x
-
-
-
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! -
-
Permalink Reply by DragonandFox on
-
My dr at Columbia Presbyterian Hospital in NYC has received a grant and will start research in the new year.
-
-
-
I hope all the researchers across the world share their findings and help us to get rid of this crappy condition. x
-
-
Permalink Reply by Isabel on
-
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.
-
- ‹ Previous
- 1
- 2
- 3
- 4
- Next ›
© 2024 Created by Alopecia World.
Powered by
