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: 433
Latest Activity: 3 hours ago

Discussion Forum

Outer Ear Cartilage Pain

Started by Madmasoo. Last reply by Jules Australia 3 hours ago. 8 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

random thoughts

Started by Beez. Last reply by Susiewoo yesterday. 25 Replies

Well our stories are all so similar I could almost interchange mine for any of yours. Eyebrow loss, odd scalp sensations, skin issues, progressive hairline loss etc., the hunt for the diagnosis, the horror at finally getting it. I know the fear, the…Continue

Vitamin D Deficiency?

Started by Jess. Last reply by Maz on Monday. 29 Replies

Hey Everyone.Not long ago, someone posted about the Coimbra Protocol. I hadn't heard of it, and did a little researching, and it appears that high doses of Vitamin D are a large part of it. I then did a search in Google Scholar regarding vitamin D…Continue

Any one takes Viviscal???

Started by SCS. Last reply by CurlyK on Sunday. 4 Replies

First time I've heard of it today. I don't think it can regrow hair we lost, but maybe help from thinning further? My friend's hairstylist told her that a few of her clients take it and swear by it. How much more anectodal can this be??? LOL! I…Continue

Comment Wall


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Comment by sallylwess on Saturday

Thank you for this information Airam.  I will look forward to hearing about your appointment.

Comment by Airam-FFA on Saturday
Hi Christi Q

I will post after my visit.

Comment by Christi Q. on Friday

Please keep us informed regarding your appointment with Guy's!  Thank you Airam-FFA

Comment by Airam-FFA on August 11, 2017 at 1:03am
Not sure about this drug either - this also sounds like it has horrendous side effects:
I have come to the conclusion that the loss of my hairline is the better scenario

After nine months of asking, I have been referred to see the Dermatologists at Guy's in London - they treat a lot of cases of FFA so I am eager to hear what they have to say. (My GP practice refused my request - they said basically said that any treatment for FFA didn't have much success :/ so they were not going to fund me getting a referral to the specialists at Guy's. This news was very disappointing - in fact devastating:(

I was eventually referred by my new dermatologist - as she is very keen to learn as much as possible about this condition - FFA. This is a very much appreciated outlook after the negativity I have experienced with the previous dermatologists I had seen.

Trying to stay positive and eat healthily in dealing with this crappy condition.

Comment by Jules Australia on August 8, 2017 at 11:01pm

Just wondering how many of you seem to have diffuse lichenplanopilaris az well as ffa. I have areas of tenderness & sometimes a splintery pinprick pain over top of my scalp. Also last few months have had painful tinyl pimple like (think described as papules in research articles) in many spots all over scalp (top, sides, back, behind/above ears & recently a couple near nape of neck); does anyone experience these.. My   scalp dysesthesia can be anything from just mildly tender (sometimes itchy) to uncomfotably tender; feeling at times in some areas of splinter stuck just under skin  (guess this is from inflammation innervating nerves around follicles)......often have mild itchy sensation along front hairline, & lately along eyebrow area (even tho majority of eyebrow hair lost).....last few days have had a very itchy pinkish red rash on neck up to under chin & across collarbones....don't know if its all connected but presume probably is.......some days (Many, espec of late)..... I struggle with this ghastly disorder..... appreciate all your comments....v difficult having a disease that noone aroundyou (in person) can relate to, let alone NEVER having heard of......i believe i have both lpp (diffuse) and ffa.... appreciate your comments thanks jules

Comment by Minter on August 6, 2017 at 8:24am

Brooke, that is interesting and thank you for sharing- I have given up on taking anything orally for FFA as I seem get every side effect that is listed, but a topical is something that might work for me- I am going to speak to my Dr about tacrolimus at the next visit. I am happy for you that something is actually working against this FFA!

Comment by Dee on August 5, 2017 at 9:11am

Brooke, thanks for sharing the encouraging news about the liquid tacrolimus.   Can you tell me how to get that?   Is it a compounded drug or can you get the liquid form from any pharmacy?

Thank you!

Comment by sallylwess on August 4, 2017 at 4:02pm

Brooke, that is fabulous news.  Also, it is great information for the rest of us.  Liz, I appreciate the information about the loss at the nape of neck also.

Comment by Brooke on August 4, 2017 at 2:15pm

I don't post often but do follow the FFA discussion.  Just want to share a ray of hope in my journey with this disorder.  I was diagnosed about 4 years ago, although I probably had FFA longer and have been taking plaquinil and antibiotics, plus steroid scalp injections since diagnosis.  I recently stopped the antibiotics because of concern about long term effects.. Hair loss has been slow; I've lost about 2.5 cm of hairline, especially around the forehead.  In the last couple of months I've been using liquid tacrolimus which I spray along the hairline once a day.  Tacrolimus is an ant-rejection drug used for people who've had organ transplants and according to my doc it is very safe for this application. 

I went to the dermalogist yesterday and for the first time ever she noticed some regrowth!  It won't likely bring back the hair I've lost but I'm hopeful that I may not lose a bunch more.  Best wishes to all of you brave people!

Comment by Halfbakedwho on August 4, 2017 at 12:05pm
Thanks Liz that's very interesting. I've been told my lacrymal ducts are "sclérosés" (scarified) and that it's a local not systemic problem, but that being said there's obviously a systemic issue when your body is killing healthy tissue. I don't think I'm losing hair at the nape of my neck, but the weird thing is the loss of sensation where my hair is gone, over my ears. Scar tissue...

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