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: 260
Latest Activity: 8 hours ago

Discussion Forum

Plaquinil

Started by Kat. Last reply by Alice 8 hours ago. 3 Replies

Has anyone had success with Plaquinil? I started it 3 weeks ago in addition to topical and injections. Argh!

Because of the Lack of studies for Frontal Fibrosing Alopecia

Started by Dragon&Fox. Last reply by Dragon&Fox yesterday. 40 Replies

My Doctor says it's almost guaranteed that there will be no studies for the disease FFA because there's NO money in it.  If there are studies that INCLUDE FFA it's because FFA has to do with hair loss which is an issue that brings in a great deal of…Continue

Hairline Surgery Option

Started by Madmasoo. Last reply by sadandunsure yesterday. 14 Replies

Hi Everyone!Brand new to the group, diagnosed about a month ago and I am 41. Been taking Doxyccline 50 mg twice a day since then and applying a topical steroid. Had a quick question: Has anyone ever looked into this? I thought since we don't really…Continue

Tags: Surgery, Advancement, Hairline, FFA

Biopsy results/language

Started by sadandunsure. Last reply by Jen S. on Monday. 5 Replies

Hi, I'm just wondering what everyone's biopsy said to confirm diagnoses? Also, is you hair along the in the "active zone" a different texture than the rest of your hair? I.e. Brittle, broken, inelastic? Lastly, were your sebaceous glands in tact?…Continue

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Comment by Sad in chicago 18 hours ago

Sad and Unsure: I am with you on both your comments. The research on transplants does not appear to be optimistic and yes, when I am "dressed" and wearing my piece I am OK, depending on how it looks that day, but without it I am a mess, physically and mentally.  I am embrassed for my husband, god forbid any of my children or grandchildren face time me before I am ready and the summer with the pool, persperation and outdoor activities is ruined.  But again, I am fortunate to afford the toppers and wear a real hair one for everyday that I style, dye and take ridiculous care of (follea, very good quality) and a synthetic that has the same cut so hopefully one thinks I am wearing my normal hair for exercise, etc.  It washes so much easier. The whole thing sucks.  If I were younger and prettier I would just shave my head and go for it.  All this messing around is exhausting. However, I was trying to be optimistic in my previous post so I will work hard to get back there!  Take care everybody.  I think I will leave this alone for a while and just try to do my "thing" and be what I hope is fairly normal and a productive part of the world.  Like I keep saying, "nobody got sick, nobody died".  In the scheme of things our suffering is slight if you think about all the other stuff that so many people have to deal with. 

Comment by sadandunsure yesterday

Sad...I agree with finnding a way to live with it. Chris has a badass haircut, it looks cool. Myself, I'm no where near needing a wig yet, but the women in my family suffer from hair thinning and end up in wigs, so I've purchased a few and plan to integrate them now while people may think I'm just doing it for fun, so if/when the day comes that I'm doing it out of necessity, it won't be much of a "shock". I guess my biggest issue is just the feeling of being inadequate or ugly when it comes off.

Comment by sadandunsure yesterday
Hey Sasholland, those transplants were not stemcell transplants, in fact, that's still a very small market and relatively new, I only see HASCI and a place in LA that does that. Also, it's inconclusive as to what would cause it to "come back" most studies, the hair grew well the first couple years, so maybe the incisions brought it back or maybe it's just in the skin. In any case, I just wanted to show evidence that it has been done...here are a few more opinions from derms/surgeons

http://www.realself.com/question/sonoma-ca-advances-transplants-fro...
http://www.realself.com/question/fort-washington-md-successful-hair...
Comment by Sad in chicago yesterday

Those who lose their eyebrows have a less severe case?  Very interesting, but I think it is subjective.  What is less, what is severe?  I did have some itching in the beginning and little red nodule bumps, stress at my job, and in my 60's post menopausal, but they are all gone now.  however, if you pull back my hair from front and around my ears, it is astounding to me how much is gone. I don't even know when I lost it, to be honest.  It just gets further and further back.   I think, at the end of the day, the focus needs to be on how to live with it without freaking out (and to be fair, who didn't or wouldn't?) and move on.  Severe, less severe, able to cover with your own hair (careful the wind!) or use toppettes, wigs, or whatever works, it is all in the approach and perspective.  To say everyone hates this is an understatement; but what choice do you have except to deal with it and get someone professional to help you feel and look your best.  

Comment by sallylwess yesterday

Ladies, this has all been very interesting.  I think these discussions have added great understanding to my own journey.  I had the first inkling of a problem in 2006 when I would have been 61.  I had a place on left temple that was very inflamed.  I went to a dermatologist and was told he didn't know what it was but that it might be psoriasis. Since I'd had psoriasis before, I thought he might be right.  He prescribed Protopic.  This treatment cleared up the spot, but I notice my hair came out in that spot as it healed.  It came out in a clump.

I'd noticed several years before that I had no hair on my arms, and I also notice I no longer had to shave my legs.  I was not concerned as I figured aging was the reason for this.

I had been on bio-identical hormones until about 2005 or 2006.  In 2005, I began using Obagi treatments on my face since I had discoloration from the hormones.  The Obagi treatments included Retin A.  I quit using this product in 2006 or so because my skin was so red.

In 2010, I lost my daughter to suicide.  Over the next year, my hair thinned considerably.  My doctor said it was from shock and stress.  In 2011, literally overnight, I lost my eyebrows.  They had thinned somewhat, but not badly.  I woke up one morning and proceeded to put on my make-up and was shocked to see I had no eyebrows.  

In 2011, my hair thinned, but my profile picture was taken in 2011, so you can see I had quite a bit of hair.  

In 2012, I suffered a head injury and was very stressed.  I lost a great deal of hair that year, and my scalp would itch and crawl.  My endocrinologist urged me to get a biopsy because she said my problem was not hormonal.  

Finally, in 2013, I did get a biopsy.  I had LPP and FFA.  I was shocked.  

I no longer can disguise my hair loss without wearing a hair piece.  I have treated with shots and topical ointments.  I have had allergic reactions to all treatments and broken out in rashes.  I no longer am treating my condition.  I am trying to learn to accept it and move on.  It has been a difficult journey.  I am grateful for all of you.

Comment by Maddy, California, U.S. yesterday

Here it is Anne Louise:

http://www.bigmountaindrugs.com/

You have to fax/email them your prescription. I can order 3 bottles for less than $60 and it works great. I was buying Latisse at about $100 per bottle for a year or so before someone suggested this to me! 

Comment by Linda from Cincy yesterday

While we're comparing stories I think it's pertinent to add that I was under extreme emotional stress from about 2005 to 2009 taking care of my Mother in her last years and issues around siblings and money that continued for a nearly two years after her passing.  I've noticed others have commented they had some extreme stress in the years preceding their diagnosis.

Comment by Anne Louise yesterday
Maddy, can you share the web site you use to order the Latisse? Would love to get it for less than $80.

I was on Facebook this morning and for a minute I thought I was on this site. Someone had posted before/after pictures of their forehead. I instinctively studied the hairlines, (as I do with every human being I encounter!)and it sure looked like the beginnings of FFA. The post was about wrinkle reducing cream from Rodan and Fields! I've never heard of this business, but I wouldn't be surprised if Retin A is an ingredient! It seems to me the vitamin A theory is a very plausible one, especially given that FFA is a newer disease,(these creams were not around in the 70s) predominantly among affluent older women...those with money to spend on age reducing creams. To my knowledge I only used a retinoid cream a few times, years before I was diagnosed with FFA.
Comment by Linda from Cincy yesterday

...also why does "burnout" occur when loss reaches somewhere near the middle of the scalp all-around.  What is it about the hair follicles towards the back of the head that protects them from whatever (DHT?) is destroying the frontal scalp follicles?   Because FFA seems to come to a dead stop when it gets to those follicles.

Comment by Linda from Cincy yesterday

Thanks Kat and Maddy for sharing that you both were on bio identical hormones when you were diagnosed with FFA.   That's a little discouraging as I am hoping  restoring hormonal levels might help (specifically progesterone) but good to know not to put all my hopes in one basket. 

My FFA started maybe three years ago (age 58) with gradual loss of my eyebrows.  Actually I started losing my eyebrows in my early fifties but use of steroid creams brought them back.   When they started disappearing again three years ago I expected the cream to bring them back again but it didn't.   My derm at that time diagnosed my loss of eyebrows as  "alopecia areata" but I now realize it was the start of FFA (which was diagnosed with a biopsy in July 2014 when I noticed redness around my (now non-existent) widow's peak.  

My scalp loss has been slow and is still hidden fairly well with my bangs and my hair is fairly thick.  Eyelashes not affected as yet.   I was never a "hairy" person but in the past year have lost all the hair on my arms and skin looks strange (like one of those freaky hairless cats).  I realized I haven't had to shave my legs for many years but remember my Mother was like that in later life and she didn't have FFA.  

Probably TMI but I still have underarm and pubic hair, that hasn't changed at all when I don't have a trace of body hair anywhere else.  What is protecting those hair follicles so they remain unaffected?   Which leads me to think there is some hormonal connection. ..but what??   As you all know this is so frustrating!

 

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