Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 601
Latest Activity: Jul 8, 2023

Discussion Forum

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by Caro UK on November 6, 2013 at 4:45am
I agree. I'm sure my immune system has been damaged by working nights. I first noticed my FFA about 18 months ago. I had had a period of nearly three years when I was not working and I felt really well during this time. I had to return to a very stressful job three years ago. I'd spent a year looking for other less demanding work but had got nowhere. From the first day I felt stressed. I was working 30 hours a week to start with. It was too much but I needed the job and that was the contract on offer. After a few months I asked to work nights. I had always worked nights in the past. It is very hard on the immune system but I cope better with the work at night. I work a twelve and a half hour shift on my feet pretty much continually, sometimes without a break. I'm 58. Last year I asked to reduce my hours which was allowed. It has made a difference as I have more time between shifts to recover, but the stress I am putting my body through every time I go to work cannot be helping me. My immune system is constantly being compromised but I have to keep going for another 18 months before I retire. I'd be interested to know if there are any other shift workers on here who have been similarly affected.
Comment by Brenda, IL US on November 5, 2013 at 9:24pm

I really believe this is stress related.  Every time i have been under extreme emotional or physical stress my temples have receded and my hair has thinned.  It always grew back but not as thick.  Since i had surgically induced menopause in 1998 its gotten worse.  I also developed horrible allergies in 1992.  Thats when my doctor thinks i developed lupus.  Its a puzzle.

Comment by Jules UK on November 5, 2013 at 6:01pm
Sorry, it was aconite, not arnica.
Comment by Mandy on November 5, 2013 at 5:13pm
Thanks Jules... Think mine is stress related too lol. I will let you know how I get on too x
Comment by Jules UK on November 5, 2013 at 4:46pm
I'm also intrigued by the idea of 'whacking' the scalp with something spikey..... Think I'll go shopping for a new hairbrush. X
Comment by Jules UK on November 5, 2013 at 4:45pm
Hi Mandy, I've tried homeopathy, but the therapist gave me tablets to calm my anxious personality! Which apparently is at the root of this problem. The latest tablets were arnica and should reverse the effects of shock. I can't say I'm convinced but I'm sure that my FFA was brought on by stress. Anyway, there's been no improvement. If there ever is, you'll all be first to know!! X
Comment by Mandy on November 5, 2013 at 4:18pm
Hi ladies, I'm new on here... Joined the weekend :0)
Saw my GP in May and was referred to the Derm... Due my biopsy the end of the month, but it know it FFA! Derm took me of Doxy that the GP had prescribed and changed from Betnovate to Dermovate... This burnt my head so back on Betnovate.
But I have been trying natural remedies... Oils from my aromatherapist which seem to help loads to reduce the redness. I am very interested in Homeopathy as they deal with the cause and where the problem began... Has anyone gone in this direction?
Comment by Celia on November 5, 2013 at 2:58pm

Annie - that is absolutely right - of that I am sure.  My system went into overdrive almost 3 years ago when I was battling with pneumonia.  I am certain that I absolutely know this was the cause. I was so ill and eventually had to shuffle around using a zimmer frame, so thin and weak.  3 weeks before all of that I was playing squash, swimming gyming and cycling.  How to correct it is the BIG question.  At the moment most of us are on various cocktails of treatment and we must accept that the medics have not come up with a 'cure' rather they are doing as much as they can by trying different meds - it is difficult to know whether meds are working or whether any changes in the condition would have happened anyway. In other words - 'shots in the dark'.  The only treatment I can be sure of is the topical kind - ie dermovate / clobetasol.  This does 'dampen down' the redness, but I don't really have a clue if hydroxychloroquine or any antibiotics work.  This frustrating situation is what we are all trying to get our heads around.  My hairloss continues despite treatment and this is the case for many of you.  Apologies for 'going on' a bit - sometimes monologues feel a bit self-indulgent but good to be able to sound off on this forum. x

Comment by Annie on November 5, 2013 at 2:08pm

Celia, I think the problem is that our autoimmune systems are in overdrive, which isn't healthy.  Something has caused our autoimmune systems to overreact and attack our own bodies.  I've been healthy my entire life and taken good care of myself by exercising and eating healthy.  I do have seasonal allergies, but I've never been sick other than an occasional cold or flu.  My doctor said it shows God has a sense of humor.

Comment by Celia on November 5, 2013 at 11:21am

Interesting !  We are all trying to stay healthy and eat all the right things, and as Jean said 'improve auto-immune systems' .  I am going to ask a dumb question now...............why are we offered drugs to suppress the auto-immune system on the premise that it is the AI system that is attacking healthy hair follicles and destroying them so that they scar over.  I was offered ACTOS but declined as it can, in suppressing the AI system, leave the user less likely to fight infection, that is just one side effect that may happen. 

 

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