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: Jul 14

Discussion Forum

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

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

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Comment by CalvinHarrison on July 13, 2017 at 4:45am

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Comment by Lisa D on June 25, 2017 at 2:53am

Like Annie55, I had been diagnosed with rosacea many years before my FFA diagnosis although it has seemed to be under control. On the other hand since August 2016, I have been getting styes (chalazions) and what I think are dry eye symptoms. I  have been diagnosed with blepharitis. The eye problem seems to have started about 4 months after I started getting Kenalog injections. I don't know if any of this is connected the FFA with the rosacea with the blepharitis, or the eye problems and the injections.   Or, as some have said, maybe this is a case of once you have an autoimmune issue, you get others. The FFA is bad enough without having styes on my eyelids (sometimes three at a time)  Anyone else seen any similar pattern ?

Comment by Jen on May 31, 2017 at 2:57pm

Alopecian Beauty Mixer,

How do Canadians get details of your event?

Comment by Alopecian Beauty Mixer on May 31, 2017 at 5:53am
Hi guys I'm having a special Event called:
Alopecian Beauty Mixer (Charity Event)
(STRICTLY ENFORCED DRESSCODE NAVY BLUE & WHITE /CREAM ONLY) September is Alopecia Awareness Month thier ribbon color is navy blue so September 30, 2017, We'll be launching a fundraising campaign to support individuals who suffer from the diseases Alopecia Areata & Cancer. This is a family friendly event that will include networking, food, drinks, special guest, custom wig give aways/demos, complementary massages, makeovers and A lot more. Including a bartender for 21+ participants! We also will have live performances/Celebrity photographers are going to be in the building for personal and group shoots. Why not have a amazing time while supporting a positive cause? Lets come together as a community and show support, love, while giving back to one another! See you there...
Comment by Pawns1 on May 25, 2017 at 10:05pm

I just had a consultation with Lucinda Ellory in NYC and am interested in getting the intralace minima. Could those who use it give me some of your experiences, both in terms of pain or scalp inflammation or additional hair loss, not associated with LPP/FFA. Thank you!

Comment by Linda on May 17, 2017 at 9:38am

Hi, I am new to the group.  My forhead is so high now I feel the need to get bang extensions.  Can anyone recommend the best place to order a piece?  It would be nice to find a piece that is also a head band.  Thanks for any recommendations!

Comment by Kay on April 29, 2017 at 4:37pm

Hi Beez, your experience is almost identical to mine, even the left eyebrow disappearance being more prominent. I lost all my hair on my legs and arms some years before the FFA (which I don't mind that part) Not sure if that is related or menopause. My Dutch grandmother and her sister also didn't have hair there. Anyways, hoping for a cure to stimulate and dissolve scarred follicles :-(

Comment by KarenGinny - Iowa, US on April 28, 2017 at 4:28pm

I've been taking Methotrexate for about 2 years now, going up and down on doses. It hasn't given regrowth - it isn't meant to. It is supposed to stop the inflammation and red and itching. Which it seems to be working for me without any side affects. I did have to have a liver biopsy as it can affect your liver after taking it for a while, but it came back fine so I've continued taking the med. I don't notice much redness or itching, unless I go too long between washing my hair.  I did try Plaquenil but had an allergic reaction to it - hives. 

Comment by Lo on April 3, 2017 at 7:44pm
Tessa, I used methotrexate for tHe past 3 1/2 months. I was on celcept for 2 years and he didn't feel that was working. I just went for my checkup last week and he took me off of the methotrexate, indicating it wasn't doing anything either... so he didn't want to prolong my taking meds I'd they weren't effective. These are immune suppressants so they won't grow your hair back.... the idea is to halt the disease and the symptoms if you're having any (itch, pain, redness, etc. ). If you're comfortable giving it a try for a few months... go for it. Everyone reacts quite different to these meds/treatments. Good luck to you.
Comment by Tessa on March 30, 2017 at 6:34am

Hi,

Has anyone used methotrexate for FFA? My dermatologist is recommending it as nothing else seems to work.

Was it effective? Did the regrowth last? Were there horrendous side effects?  Grateful for any info to help me make decision.

 

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