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: 602
Latest Activity: on Monday

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron on Monday. 10 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

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

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

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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

Comment by Jules UK on September 8, 2013 at 4:32pm
Hi all, feeling very mixed up at the moment.... Just back from a great week in Cornwall. But after using Regaine for about 3 months and taking Plaquenil for 6 months, my hairloss has accelerated considerably. Do I carry on in the hope that something may kick in? Hubby has hinted that a wig may be closer on the horizon. I'm trying to just get on with things as normal but so churned up inside! I've invested in some lovely soft buffs and circular carves from Seasalt. Even on still days, just walking moves the hair to show bald bits and there's barely enough hair to cover my ears anymore. Just feeling disbelief! Sorry, needed to offload! Thanks for being here! Xxx
Comment by Rita - Canada on September 7, 2013 at 4:26pm

Sigga-Excellent advice, wish I had done that but Derms should have come up w/this: taking a photo of one's frontal hair areas before a treatment(which are usually 3-6mths) & one afterwards.

Comment by Sigga on September 7, 2013 at 11:54am

Hallo I have not being here for a long time, but I have but some photos of my hair loss...

Comment by Rita - Canada on September 7, 2013 at 10:13am

I was given Clobetasol liq.to apply to scalp & derm merely said put some on & rub it in.I decided to only put along the thinning area sparingly. Next appt,she said there was atrophy of the skin & I can't bring myself to use it more than once in awhile & don't believe it does anything but thin the skin. She also gave me Doxycycline 100mg x 1 per day and even though it's against my better judgement of using this drug, have followed her advise by using it for 3 mths now. How on earth does one really tell if hairloss has slowed down.What measure is there to tell the derm if anything has helped other than we/ourselves. We see the thinned & balding areas & know there is still shedding but as to what degree????

Comment by Kath UK on September 7, 2013 at 5:38am

Thanks, Celia - you're a honey. Got your message OK.
Well, the sun's come out again here so I'm going to finish a painting then I'm off to the shoe shop.
KarenGinny - I had no problems with hydroxy. but I was advised to always take it with food. Good luck with it and I hope you are one of the 50% it works for.
Kath xx

 

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