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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

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

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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Comment by Rita - Canada on September 10, 2013 at 9:36pm

I saw my derm today and she encouraged the use of Rogaine 5% but I recall reading that several people had more shedding for awhile upon starting. Is this what most have experienced? Derm said this happens because the hairs that are just sitting there ready to shed get pushed out by the newly grown hairs. I understand no growth can occur on the areas where FFA has demolished.

Comment by Polly UK on September 9, 2013 at 11:33pm
I am also allergic to nickel!
Comment by Polly UK on September 9, 2013 at 11:31pm
Hi, I felt fine taking one Hydroxychloroquine 200mg tablet a day for two weeks but after four days of taking two a day I started feeling sick and dizzy so as we're on holiday this week I've cut back to one and already feeling better. Has anyone else had this problem? I am also taking iron as prescribed and applying Dermovate but just doing it once a day for convenience while on holiday. I had felt ok with both of those for past month so it has to be the increased Hydroxy dose...
Liz, I have a mouth full of amalgam fillings, in some cases it's more filling than tooth!
Comment by Rita - Canada on September 9, 2013 at 8:42pm

Maddy, I recall you were taking the same med Doxycycline 100mg only twice a day. Also Clobetasol on scalp twice a day. Do you see any difference. i see my Derm tomorrow. Did you also have those scalp injections ev.8 wks.?Thanks.

Comment by Liz on September 9, 2013 at 12:28pm

Hi Ellen. I'll have to find out about having my fillings replaced. I have 3 which have been in my mouth for about 30 years!
I am allergic to nickel. I have also had bouts of eczema which flare up from time to time and is made worse if I jewelry x.

Comment by Annie on September 9, 2013 at 12:22pm

Liz, I also had silver fillings, but they were replaced gradually between ten and fifteen years ago.

Comment by ElleMN, USA on September 9, 2013 at 12:15pm
Liz, I had my nine amalgam fillings replaced with composite fillings in Dec 2011 because my dentist husband had come across one article mentioning a possible connection in all his research about LP. I'm still losing hair but I'd say my case is more on the mild side, so not sure if it's helped or not. I've also abandoned steroid shots and stopped using creams and ointments and shampoos. I'm just not sure what works and what doesn't so I'm just trying to stay healthy and simplifying things; I also couldn't afford all the treatments! If you can afford to have the fillings replaced you'll be happy with the results but be prepared for some tooth sensitivity while you get used to the new fillings. Do you know if you have an allergy to nickel? That's another trigger for my eczema that I've wondered about with FFA. I think I might just be more sensitive to metals. Hope this helps!
Comment by Pam on September 9, 2013 at 9:41am

Jules - I do totally sympathise with you. My holiday in Cornwall was badly affected this year by my increasing sensitivity over my hair loss. I was very self conscious in the sea about my balding sides, and windy walks were a nightmare. I wore a hat a lot, and twice it blew into the sea! Also my eyes seemed more sensitive to the salt water and got red and itchy, and my scalp seemed on fire at times, itching. It seems to have settled down more now that I am back.
I do have tooth fillings, not sure what is in them though!

Comment by Rita - Canada on September 8, 2013 at 7:48pm

Liz:I have many, loved/still do, my sweets. I've heard that some people actually do have them removed & refilled w/other kinder material. I wonder if any of the Derms/research has looked at that aspect.

Comment by Liz on September 8, 2013 at 6:18pm

Hi all. Jules I've been looking at the handybands from Seasalt. Do let me know how you get on with it.
Who on this site has amalgam/silver coloured fillings? I was reading something about the mercury in them causing hairloss and maybe causing lichen planus. Both my mum and I have several of these type of fillings.
xx

 

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