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 Marian on March 27, 2014 at 2:53pm
I have been on plaquenil for years for Lupus and it has not prevented my getting FFA or stopped it. Perhaps it has slowed down the progress but how is that measured as there seems to be no true benchmarks to be had. I am on plaquenil, Doxy, steroid shots, clobestol steroid cream, Rogaine and oh yeah an anti inflammatory diet that I mostly adhere to. My FFA and LP just goes on its merry way no matter what I throw at it. I am just wondering how many of us have moved to the next level and are wearing a topper or wig?
Comment by Celia on March 27, 2014 at 1:49pm
Hello all, just doing a bit of research, copied this piece dated 2 years ago :-
Unfortunately, there is no proven cure for frontal fibrosing alopecia (FFA).[3]  However, because hair loss in frontal fibrosing alopecia (FFA) is thought to be caused by inflammation of hair follicles, treatment often involves using anti-inflammatory medications or ointments, such as corticosteroids or hydroxychloroquine (brand name Plaquenil), to reduce inflammation and suppress the body's immune system.[2]  One study of 36 individuals with FFA found a significant reduction in symptoms after six months of hydroxychloroquine treatment; however, they found minimal benefit to continuing hydroxychloroquine treatment after six months.[4]  Researchers continue to question whether or not treatment is effective, or if hair loss in FFA stops naturally.[5]
Shall we hope it stops naturally ?    I have taken Hydroxy for 9 months or so.  Stopped it about 3 weeks ago - no real difference noted.
I have a friend who has rheumatoid arthritis and hydroxychloroquine is listed as drug used to alleviate symptoms of this - we know this anyway - she takes methatraxate (sp. prob wrong)  I have seen this drug on lists of possibles for auto immune diseases, any thoughts, anyone ?
Comment by Jules UK on March 25, 2014 at 8:58am

A belated thank you to Celia for a lovely day on Saturday.  You always make us so welcome! And it was good to see new faces as well as the familiar friends. 

Jules x

Comment by Paula uk on March 23, 2014 at 1:39pm
Hi all,
Celia- thankyou so much for lunch yesterday. It was great to have the opportunity to meet some other ladies from this site.best wishes to you all.
Px
Comment by Meme on March 23, 2014 at 12:13pm

Oh, sorry Celia, I'm always leaving little plastic boxes lying around. Please dont worry about sending them it will be a good excuse (not that I need one) to come to your barbecue in the summer.

I'm up for being cured!

meme x

Comment by Celia on March 23, 2014 at 9:19am

Thanks for the messages all of you - the pleasure was mine - just to have a chat and see you again and to meet new ladies.  You are all so positive and inspiring ! I have one pretty umbrella with butterflies on that was left here and also Meme's  little plastic pots - I will keep these for you unless you would like me to send them - otherwise......we'll have a barbecue late summer when the weather is balmy and we will all be cured by then.  Best wishes. x

Comment by Polly UK on March 23, 2014 at 9:06am
Thank you so much Celia for the excellent lunch and warm welcome to your lovely home. It was really good to meet up and share experiences and I hope we can keep in touch and meet up again. Following conversations yesterday about food allergies I have decided to cut out wheat and see if it helps alleviate some of my wierd symptoms.
Celia, the Turmeric Extra which contains Bromelain and also Curcumin, Piperine and Ginger and was recommended on here by Debs is by Veganicity from Health Plus online. It's £11.95 for 30 tablets.

Thanks again Celia and good wishes to all - Polly xxx
Comment by Pam on March 23, 2014 at 7:44am

Celia

Thank you so much for the lovely lunch yesterday - it was so kind of you to give us all a chance to get together, and I think we all had a really good time! It was so nice being able to have the opportunity to meet up with other members of the forum and talk freely about our condition - I hope we will all keep in touch, and meet up again! Best wishes to everyone,

Pam

Comment by Meme on March 23, 2014 at 5:48am

Celia

Thank you so much for your hospitality and inviting us to your lovely home. Everyone was so friendly, informative and supportive. It was well worth the journey.  Thanks again Celia.

meme x

Comment by Valerie on March 22, 2014 at 5:12pm
So lovely to meet you all, as a newbie you made me very welcome. I agree I think we all got something from our conversations. Thank you Celia for your hospitality and support. Hope to see you all again.
 

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