Frontal Fibrosing Alopecia


Frontal Fibrosing Alopecia

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

Location: Dubai UAE
Members: 411
Latest Activity: on Saturday

Discussion Forum

New to FFA

Started by Temmelou. Last reply by Leigh on Saturday. 27 Replies

I was diagnosed with FFA a little over a month ago.  I am using a Fluocinolone Acetonide Topical Oil twice a week.  I used it every night for two weeks at the beginning.  My dermatologist wanted me to go on Plaquenil, but I have refused at this…Continue

Columbia U Derm Dr's, Dr Angela Christiano and my own, Dr. Lindsey Bordone are starting research.

Started by Dragon&Fox. Last reply by Leni May 16. 21 Replies

"Dr Angela Christiano found Autoimmune Alopecia to be genetically linked with Rheumatoid Arthritis, Celiacs Disease and Diabetes Type I.  From these common genetic links it seems very sensible for us to be looking down the lines of diet to perhaps…Continue

Platelet Rich Plasma Therapy

Started by April. Last reply by turtles May 16. 8 Replies

Has anyone tried this procedure? They draw your own blood, separate out the platelets using a centrifuge, then inject the platelets back into your scalp. Apparently it is used for all sorts of things like arthritis and injuries as well. I have been…Continue

Facial papules

Started by Charlotte. Last reply by Charlotte May 16. 27 Replies

Does anyone else have these facial papules? And if so, are there any treatments??? My derm told me, there is no help concerning this problem ...It's all so frustratingI really hate all of this (sorry, having a bad day..)Continue

Comment Wall


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

Comment by Linda on Wednesday

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


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


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.

Comment by Claire Julia on March 29, 2017 at 6:59am
Hi Liz thanks for that. I have just ordered the shampoo from all shampoo 8.05.
I thought thT seemed reasonable.
Are you using all the products they recommend?
Comment by Liz on March 29, 2017 at 6:33am
Hi Claire. I buy the shampoo and conditioner online as it's much much cheaper. The solvent and glue I still buy from Lucinda as it lasts ages. I also use a few other bits that I find helpful. Message me if you like xx
Comment by Claire Julia on March 26, 2017 at 12:11pm
I have had the interlace now for 6 weeks and I am getting used to it. However I still struggle every time i wash my hair. For the ladies who have the system where do you buy the shampoo and solvent from to remove the glue? Is it a reasonable price at Lucindas?
Comment by Classical Anne in NC mountains on March 18, 2017 at 3:39pm

Anne, I'm sorry you continue to have thyroid issues, beyond the norm.  If you have not used the Latisse in several months, have you seen any loss of lashes?  How far gone were yours when you began?  Mine were about 75% missing, about 8 to 10 short, thin, nearly colorless lashes.  I am thrilled that they are now naturally dark and curled [like my hair, what's left of it].  What style are you now wearing your hair that disguises the loss?  I've recently cut mine very short, which works fine at home and most errands.  But I never go to church, out to dinner, etc. without one of my wigs.


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