Frontal Fibrosing Alopecia

[Looubylou]

Anyone else out there got a diagnosis of FFA?

Yes. I've had it for nearly 10yrs. Think it may have started as a result of 2 large doses of antibiotics for cellulitus. Have no arm/leg hair, no eyebrows (have them micro bladed on). I still.have eyelashes. Hair now going from the back of my neck and by my ears. I'm now waiting for a wig. I cant go out in the heat as I get sweaty and my hair, what's left of it, sticks to my head. Try looking at Alopecia websites. Lots of them have forums on there. From what I read there is no cure. Tried all the vitamins etc. B.12, Vit D, makes no difference. The lady who does my brows said I should have taken probiotics with the anitbiotics as they strip you of good gut bacteria and often your body turns on itself?? Good luck. There are more ladies out there than you think so you are not alone.....

Also, are you taking blood pressure mefication? I've read that that can be the cause of hair loss too!

Thankyou so much for responding Boeing777 , I was feeling a bit lonely! I'm 52, and mine started about 6 year ago. My GP's were very dismissive, said it was female pattern hair loss - it was very clearly not. I'm white, but have very dark hair and olive skin, so used to having visable hairs on fingers, arms, and strong eyebrows. Arm, finger hairs had gone but I hadn't noticed them disappearing. The very fine hairs on sides of face have gone. I would say half my brows - I use pencil now. I've lost about 2 inches from my hair line, and quite a bit from the sides. Being dark haired I feel my appearance has really changed. Most people don't realise until I lift my fringe - then they are shocked. I think the fact that I had a very low hair line, has disguised the loss to some extent. It has also affected the skin on my face and neck dramatically - apparently that is less common. I get upset when I see and feel the white build up around the hair shafts at the front as I can see how much is going to go next. I used topical steroids for a while. Dermatologist discharged me because I wouldn't take the malaria meds (worried about eyes). At the moment I'm trying to just feel lucky that I have more hair than I thought I would have if it progressed as fast as it did in first 2 years. I hope you are well Boeing 777 and coping emotionally. There is probably something in the antibiotic theory - I've had lots in my life, starting as a young teenager, for acne. I'm hoping for burnout. Do you have other autoimmune issues? I most certainly do, and had raised ANA, in dermatology bloods, but know I'll be brushed off by GP's again so not rushing back.

No other auto immune that I know of? My hairdresser says sweating causes hairloss too! Its just a pain losing the hair. I really dont want a wig, but I'll have to get one as my hair is so thin now. Oh well, grin and bear it until someone finds a cure?? Think more research is done in the US than here from what I read on the Alopecia websites. No, no burn out. Not even sure the Covid jab didn't accelerate it a bit.....Good luck.

Hi there,
I have just posted up thread on another post regarding this. Hello ladies ! Im 47 so hard all this.i am waiting my first dermatologist review after being to 1 3 yrs ago who did not diagnose me.i think i have been mismanaged. Have it tops 4 yrs.i think the covid booster accelerated it . AWFUL

Yes I agree..... think I lost more with both jabs!! Mind you rather have the jab than the alternative.. I got told by my Doctor 'nothing can be done so learn to live with it' Easy to say when you have a full head of hair isn't it? You do lose confidence with going out etc. But you cant let it ruin your life that's for sure. Good luck with the appointment.

Sorry, I had to namechange!

Interesting what you all say about the jabs, I thought mine had slowed right down, but I've had a definite flare up last few months. I'm fully jabbed and boosted.