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Comment by Anne Louise on July 8, 2015 at 3:27pm

LittleSadEyes I am sorry for your suffering.  Your anguish is palpable, and something I'm sure most of us can relate to.  But you are so young!  I wonder if you may be the youngest documented case.  With your estrogen levels and hormonal problems, in my opinion there must be a link between hormones and FFA.

Thanks for posting those articles.  The first one referred to FFA as a varient of AA, soemthing I have never read before.  AA is not scarring and the hair can grow back.  That was not a medical journal, so perhaps there is some misinformation.  However my derm seems to think there is an AA component to this since we lose body hair too.  My understanding has been that FFA is a variation of LPP, as the biopsy results show elevated lymphocytes (a type of white blood cell).

At the last CARF meeting I went to back in January, two women were talking about laser therapy.  They bought their own machine and split the cost; they seemed to be having some success, but it was too soon to tell.  I was dealing with other stuff at the time and didn't have a chance to speak to them afterwards, but perhaps this is something some here can pursue.

Comment by LittleSadEyes on July 8, 2015 at 2:03am

Donna, i am happy to be a guinea pig haha. I still have relatively recent hairloss so perhaps i am a good candidate. Bit expensive though!

Comment by Donna on July 8, 2015 at 1:05am

Thanks for posting those articles LittleSadEyes.  Very interesting.  I think laser treatment maybe helpful in some cases if the treatment occurs early enough - prior to the scarring.  Has anyone tried it?

Comment by Donna on July 8, 2015 at 1:00am

Comment by LittleSadEyes on July 7, 2015 at 11:40pm

Here's another http://archderm.jamanetwork.com/Mobile/article.aspx?articleid=1105344

You might want to save yourself some reading and scroll straight down to "comments"

Comment by LittleSadEyes on July 7, 2015 at 11:34pm

I don't know how much credibility there is in this; but I thought you all night be interested to read about this lady treating her ffa with laser. http://www.miamiherald.com/living/article1967147.html

Tell me what you think!

Comment by Sad in chicago on July 7, 2015 at 4:28pm

Bonnie Barsky is my primary derm

Comment by Kristen P on July 7, 2015 at 4:05pm

I want to provide a more robust/heartfelt answer when I have more time, but did want to mention that my doctor thinks slowing down the progression is very possible, and I have faith in her. I haven't really noticed much loss in the past 10 months. One thing I find with this is that if I shed, my knee-jerk reaction is to think "Oh no, my FFA is flaring!" but then I remember that I've ALWAYS shed more in the summer. I also do not wash my hair every day, so when I do wash, it's two days worth of shedding. I have been on minocycline since October - first twice a day for three months, then once a day for three months, now I'm on every other. I go back in August for a check up, and the goal is to take me off it. My heart has gone out to you, LittleSadEyes, with every post I've read, as I know how scary this can be. I'm at work and in a rush but wanted to weigh in that my doctor thinks slowing the progression is very possible, especially if you are "young" for this condition (and you're obviously so young for this if I am "young" for this at 36 when I was diagnosed!)

Sad in Chicago - what doctor do you see?

Comment by Sad in chicago on July 7, 2015 at 3:42pm

LittleSad Eyes:  My derm told me nothing works.  I tried cortizone in my eyebrows, to no avail, and ouch that hurts!  We would take some malaria medicine, but I would never do that!  I tried Rogaine and propecia, to no avail.  I have since seen a derm who specializes in hair restoration and transplants.  He is not sure it would work with this condition, so has offered to do a "test" strip.  However, the expense of the operating room, staff, etc. is not discounted for the test, so not sure I can afford it -- especially if it does not work!!!!!  Thinking about it and perhaps doing more research.  And yes, all the fuzz, moustache, stuff around ears, etc. -- gone.  No more messing around with bleaching, tweezing, snipping, etc.  That's the good news.  Legs and arms too.  Smooth face, neck and body like a baby.

Comment by LittleSadEyes on July 7, 2015 at 7:53am

LoriO you are so kind and that just means the world to me. I have been checked for PCOS butdo not have any cysts. I actually have very low estrogen and elevated adrogens and cortisol due to Fallopian tube scarring and minimal egg production. I am essentially going Into menopause all because I was abused a few years back by a piece of scum who gave me an infection which permenantly scarred my reproductive organs. It's fairly devastating but as horrible as it sounds the hair loss is worse. I am losing everythjng on my head painfully slowly.. I can't even begin to describe how I feel. I'm sure you know. I feel vvery certain that I have ffa at this stage.. I guess my derm will tell me next week. I am prepared for the worst

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