Frontal Fibrosing Alopecia

Information

Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 426
Latest Activity: 2 hours ago

Discussion Forum

FFA confirmed by hair loss specialist; prescribed: Dutasteride, Doxycycline, and Clobetasol w/ Minoxidil

Started by Jess. Last reply by somad 2 hours ago. 44 Replies

Hi All,I posted a couple months ago and stated that I suspected I had FFA. After going to one dermatologist who basically said my eyebrow loss was medical mystery, I did a lot of research and decided to go to another dermatologist who specializes in…Continue

Short Pixie haircut then a super short Buzz cut- has anyone done it?

Started by illustr8r. Last reply by Minter on Sunday. 8 Replies

I'm definitely having a flare and I'm shedding a lot. I'm just sick of trying to fake that my hair is what it once was. I had a beautiful straight bob of bouncing brunette hair. Now it's just a limp sad weightless hoax. In 2 weeks I'm going to it…Continue

BLOOD SAMPLES NEEDED BY GUYS HOSPITAL LONDON FOR FFA RESEARCH

Started by Debs. Last reply by Minter on Sunday. 22 Replies

Please email Dr Christos Tziotzios at Guys hospial in London if you are willing to give a blood sample to help his FFA research. The research clinic is open on Wednesdays. If you can't get to London you can give a sample at a clinic near you, they…Continue

Outer Ear Cartilage Pain

Started by Madmasoo. Last reply by diana on Friday. 5 Replies

It's been awhile!Update on my status from being diagnosed 4 years ago - the hairloss continues, now starting in the front hairline and more of my eyebrows.  I am off of all Rx as nothing was really working.  Just a side note if at all related…Continue

Tags: menopause, early, FFA, pain, Ear

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Lisa D on Sunday

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 Agneta on May 10, 2017 at 11:28am

Hi,

Anyone who has experienced bumps and swollen scalp when taking Finasteride 2.5 mg. I have been on that medication for 2.5 month and my scalp is much worse than before the medication.My derm says that I will be on the med for at least 6 month. Agneta

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.

 

Members (426)

 
 
 

Badge

Loading…

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

AlopeciaWorld.com: It's hair loss support at its best!

© 2017   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service