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: 583
Latest Activity: yesterday

Discussion Forum

So much hair loss from Rogaine!

Started by Rachel218. Last reply by emillnoore yesterday. 22 Replies

Hi all, I started using Rogaine a little over a month ago. At first I was using the 2.5% liquid however I was having major dandruff with that so I switched to the 5% foam and the dandruff is better but my hair loss has tripled and I'm really worried…Continue

Vitamin D Deficiency?

Started by Jess. Last reply by Demixl yesterday. 32 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

Botox and FFA

Started by 2Dachshunds. Last reply by 2Dachshunds Feb 3. 8 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

oral isotretinoin (Accutane), FFA and facial papules

Started by Anne Louise. Last reply by GLMV Jan 21. 7 Replies

I saw my dermatologist this week to discuss trying Accutane. Boy I was not prepared for the hoops I have to jump through to start it! It is enough to give one pause. However my derm estimates he has prescribed it about 10,000 times since it came out…Continue

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Comment by Plf on Monday

Hola all, still following the thread hoping for a miricle..I applaud how you all manage to support each other and often inject some well needed humour into your posts... seriously one has to..I was just wondering if anyone's specialist had suggested tumeric supplementation?  Tumeric is an anti inflammatory and I  have read it has been used for oral lichen planus..sorry don't know how to spell, which I believe is related to ffa...or offer is also present with FFA.?  Many thanks in advance..hang in there all.. hopefully a break through soon, salute h

Comment by Fi on February 14, 2020 at 11:38am

Hi Everyone

I would really like some advice please as I have been given leaflets at the hospital and have to decide which if any drug to try.  I have been unable to get Dutasteride but

instead it has been suggested I try Methotrexate or Azathioprine.  Has anyone had any success with these?  They look a bit scary!

I would really appreciate some guidance as I feel people here have a huge knowledge base.

Thanks so much for reading

Comment by CurlyK on February 11, 2020 at 8:45pm

If anyone lives in central Florida, we've started a CARF Connects support group. Our next meeting is on March 21. PM me if you want details.

Comment by CurlyK on February 11, 2020 at 8:43pm

Hi everyone! CARF has posted their conference schedule! So excited! Who else is going? I'd love to meet you there!

http://www.carfintl.org/wp-content/uploads/2020/02/Conf-Program-as-...

Comment by Minter on January 27, 2020 at 8:32am

 Jules, I use Revolution Hair Powder, it goes on well with the brush and pretty much stays on all day-  TBH I have no idea if it has titanium dioxide in it, at this point it probably doesn't matter anymore as whatever is going to happen to my hair is already happening and that is that, but in the meantime at least I still can fake like I have more hair then I do in front of my ears! 

Halfbakedwho, yes you should write a novel! Or at least a blog! You are hilarious and have a great way with words whether you are being funny or writing about serious stuff, I enjoy your posts very much :-)

Comment by Jules Australia on January 26, 2020 at 8:07pm

Hi, I'm back .... sorry had to help hubby with a job. The thing is that about 8 yeas ago, about 6 months prior to the onset of the severe burning on my scalp, shortly followed by obvious loss (to me) of hair from side burns & front across top of forehead, I kept having short periods where an area onmtop of my scalp would feel extremely raw, dry & irritated .... told my hairdresser but when she looked closely at my scalp in that spot she could see nothing unusual ... it was so weird, but of course now I know it was early stages of lichen planopilaris. Even when visiting trichologists & derms in those early days after onset of severe pain & burning, most of them could see nothing obviously unusual about my scalp & as I had a head of thick curly hair, I'm sure they thought I was being paranoid about the loss ..... but I knew something sinister was going on, & one useless dermatologist,in particular, thought I was over-reacting, when I told her I thought I may have ffa & lpp. She said "I have many women patients with that & you don't have it", told me I had seborrhic dermatitis, a diag she persisted with even after my third visit .... needless to say I dropped her like a hot potato, & after consulting another derm about 6 mths later it was confirmed by biopsy that this was indeed exactly what I had. My hair has diffusely thinned over top of my head over the same time period that the front, temples, sides & all around ears has been disapearing... so, for me I believe its a case of ffa & diffuse lpp. But I have chosen a drug free path & the progression comtinues after so many years, well over 7 (& I believe prob started about 2 & half yrs at least prior), slow & chronic .....  Minter, thanks to your tip I've been using boost n blend which helps somewhat, but was wondering what sort of powder you use (with brush) to diguise the whiteness around hairless temples, ears & hairline etc. Does it contain titanium dioxide like many of the facial mineral powders ??? 

Comment by GLMV on January 26, 2020 at 7:35pm

And yet I wonder if all those meds and treatment will even make a difference. My mother had FFA, didn't know it and never treated it. Fortunately for her it ' burned' out and she didn't look too bad when she passed away at 90. I'm just praying mine does too although there's no guarantee.

Comment by Jules Australia on January 26, 2020 at 6:59pm

Halfbakedwho, I love your sense of humour, don't ever change. You do have a way with words & so often put a smile on my face with your posts. I can relate to the odd feeling of numbness on certain areas of the scalp. I often have a sort of raw dry feeling in areas, & I guess at times you could say it has a kind of numb feeling. Hmmm, '"lichen teeth" description .... yep, it 'cracks me up' (in more ways than one), but mostly by that I mean with laughter. Talking about the weird progression from front to back... mine has been slow but relentlessly continuous, .... going on for over 7 years now (since the pain started) .....to be continued, be back soon  xxx

Comment by CurlyK on January 26, 2020 at 4:11pm

Halfbakedwho you always know how to make me laugh! Tiny lichen-teeth. Lol!

Comment by Halfbakedwho on January 26, 2020 at 2:40pm

No - I am not *really* writing a novel - I am playing someone on T.V. who is writing a novel! No that's not true either. I wish I could write a novel, but I lack imagination. I will read other people's novels and vicariously wish I had thought of the story. That's the extent of my novel-writing. It's enough that I listen to stories all day - my head is filled with other people's stories. Right now I should be working on my session notes, but I don't feel like it and so I'm not. 

I am impressed GLMV by you throwing the kitchen sink of meds onto your scalp (and inside). I am too chicken. Soon, Minter, I will have to get myself some of that powder, b/c you can see through my hair on top of my head in certain light. 

I am wondering what my hair will look like next summer, next year - it's not helpful to project but it's hard not to. What disturbs me the most is the numb sensation that is creeping higher into my scalp, towards the crown of my head. I wonder why the disease follows this pattern of starting at the front? Not that there's any "good" place to start - but it behaves like a creeping crud of noxiousness chewing up nerve ends and follicles with little tiny lichen-teeth. 

Now aren't you glad you don't have to read a novel written by me, after that inspired image? You're welcome. Now you go watch something on Netflix like "The Good Place" to not think about scalps and lichen-teeth. 

 

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