Replies to This Discussion

Permalink Reply by Maddy, California, U.S. on April 26, 2015 at 2:07pm

Hi,

I have had FFA since 2006, when I lost first lost hair around my right temple area (it seemed like the hair fell out fast)...in 2007, I lost it in the other temple area (again, seemed to fall out quickly)...then I started to notice some thinning at my hairline. I have lost about an 1" on both temples and probably 3/4" around my hairline. I have tried many treatments and been to many dermatologists. I have never had a lot of itching or irritation (but I know others with FFA do have this). I did have a biopsy about 3 years ago and it came back as FFA.

I recommend you go the the Cicatricial Alopecia website and get a referral for a derm in your area who has experience in scarring alopecia. Here is the website: http://www.carfintl.org/  If you join CARF (you do not have to pay anything), you will have access to their physician referral list.

I wish you all the best in finding a good dermatologist in your area!

Maddy

Permalink Reply by PamW San Diego, CA, USA on April 26, 2015 at 2:23pm

I believe the one symptom that distinguishes FFA from other types of hair loss is the loss of eyebrow hair and other body hair such as underarms and arms. The biopsies should be taken in an area that is at the edge of the hair loss (not in a dead area). As far as I know the only way to conclusively diagnose is with a scalp biopsy. I have been one who is greatly bothered by an itching burning scalp. My best solution for this has been an antihistamine. Best of luck to you.

Permalink Reply by sharon on April 26, 2015 at 7:56pm

I also lost all leg and arm hair and eyebrows are thin. I've gone to three dermatologists who confirm I have FFA but have never performed a biopsy. I have lost about 3/4 to an inch of hairline. I'm on Avodart, and planning on starting (again) Doxycycline. I occasionally use topical Fluocinonide solution, 0.05 percent. I haven't experienced much pain or itching. I actually just went for a physical exam at the dermatologist and she discovered it. That was about two years ago but looking back, I'm sure I had it at least a year before. I have my hair weaved, but learned from experience not to allow any hair color (bleach) to come in contact with my scalp. OUCH! I'm so glad I found this group as no one else has heard of FFA.

Permalink Reply by Sad in chicago on April 26, 2015 at 9:46pm

When I first noticed changes I went to fancy derm who did a biopsy and came up with female pattern baldness even tho I showed her the front of my hairline and noted that I did not have any face fuzz left and that my eyebrows were thinning.  At this point I was not losing the hair around my temples yet.  I went to see her after going to a endocrinologist checking for thyroid and other possibilties.  At the end of the day and it got worse, another derm diagnosed the FFA and I was devastated as she is certain nothing really helps.  I did try cortisone shots in my brows but too painful and over time my hairline is diminished along with facial hair, arms and legs.  Underarm is still there, etc.  

So I stopped with the rogaine, I did try propecia medication, all did nothing.  I got a topper which helps with my self esteem and everyone seems to think I have a cute hair cut and "what did you do to your hair", so cute!  (I die every time someone notices me or says that).

I did notice some itching early on; the loss was slow and not real noticeable, such as would be with chemo or something.  However my forehead is much whiter than the rest of my face as it was covered with hair for so many years....and although not itchy, sensitive and turns red easily.  Summers are tough as wiglet and toppers do not give much freedom.The only good news is that it seems to have slowed down and not gotten any worse recently, although I would never leave my house with my little toppers or a hat.  The loss is so wide now that even a head band does not help.  

Sorry to be so bleak; just realistic.  No cure.  Good luck.

Permalink Reply by sallylwess on April 26, 2015 at 11:12pm

I'm sorry you have not been able to get any answers about your condition.  I was biopsied in two places about an inch back from where the hair loss had occurred.  That was in 2013.  I began losing hair in 2006.  My scalp is very sore and irritated at times.  

I have tried kenalog shots and clobetasol.  These treatments were started in 2014.  None of them really worked for me.  I devloped allergies to both treatments and broke out in a rash on my face, neck, and chest.  

I no longer can disguise my hair loss.  I wear hats or a topper or wigs.  None of these are comfortable, nor are they solutions that I like, but they are better for me than going out with my hairline starting four fingers back from the real hair line.  My forehead is also much whiter than the rest of my skin and is not easily covered with make-up.  I believe this is because this skin is scar tissue.  There are no hair follicles left.  I can't wear headbands either because now the top of the scalp is also balding.

I also have no hair on my arms and legs.  I lost my eyebrows in 2011.  Interesting, when I recently had a pedicure, the nail tech asked why my legs were so smooth.  She said it felt like I had shaved my legs, but she said they felt too smooth even for that.  She could not feel any hair follicles on my legs.  I told her that was because all the hair on my legs had been destroyed by FFA.  As a beautician who sometimes does nails, she was very interested in the disease.  She thanked me for all that I told her because she thought she might be able to spot it in others.

I hold out for a cure.  I think there might be hope with Avodart.  I also hope for a cure for those whom come after me. 

As for now, I hold out for a solution that works for those of us whom have already lost our hair.  Surely someone can come up with a workable hair replacement that works when there is front and top hair loss only.  in my experience, wigs just don't work that well.  Toppers don't blend with those of us with curly and or gray hair.  

Permalink Reply by Jen S. on April 27, 2015 at 7:42am

Hi okalopecia.  I am sorry for the stress you are currently experiencing.  I remember being in your shoes.  For me, I noticed hair loss at my temples first.  I did have some all over itching.  Since, I have noticed thinning of my eyebrows and loss across my front hairline.  A biopsy is the definitive diagnosis tool (in my opinion).  I have a biopsy at my temples -- where the hairloss seemed to be originating at the time.  It confirmed evidence of fibrosing (scarring).  I agree, early treatment is key.  I personally have not seen a halting of progression, but I like to think I have slowed it down a bit.  It's been a year+ since my diagnosis and I think I am finally starting to find a (very) little bit of accedtance that this "thinking" is not going away.  Hang in there and I am glad you found us!

Permalink Reply by okalopecia on April 27, 2015 at 9:43am

I have added few pictures do you mind viewing and letting me know if this looks like your hair loss. Mine is almost like my hair breaks off first then the short hairs eventually disappear. At this time I do not have hair loss anywhere else.

Permalink Reply by okalopecia on April 27, 2015 at 9:52am

Couple more pics

Permalink Reply by Jen S. on April 27, 2015 at 10:16am

Yours looks very similar to mine.  (unfortunately). It's like the "normal" hairs are replaced by frizzy shorter hairs and then no hair at all.  I have not lost my arm hair or eyebrows yet - but both are beginning to thin. 

PS - my screen pic is pre-diagnosis (ahh - I remember when ...)

Permalink Reply by Mel on May 14, 2015 at 2:18pm

I did not have a biopsy, but when the dermatologist showed me pics I knew that had to be it. Just Google 'frontal fibrosing alopecia photos' and pics will pop up showing the strange looking scalp spots. Questions: Why is it so important to get the diagnosis early if there is no known effective treatment? And do the corticosteroid shots to the hairline actually cause or speed up hair loss?? Or perhaps I was not watching as closely until she gave me 10 shots to the hairline, but I seemed to lose some more quickly right after those shots a few weeks back.
I also have lost leg hair (not sure how long ago) and have lost parts of my eyebrows.... Trying the castor oil on my eyebrows every night since I read that tip on this site, in case it works.

Permalink Reply by Jen S. on May 14, 2015 at 5:36pm

For me, the diagnosis gave me answers.  With knowing what is going on, I can try to start the "grieving process" of losing my old identity and focus my fight to slow down the progression as much as possible..  I found the shots neither sped up nor slowed down my progression.  However, I have read from some that they think it helped and  from other that they think it made it worse. So...

Permalink Reply by Chris on June 11, 2015 at 7:24pm

I noticed my eyebrows going first.  I was in denial about my hairline for a few years. Now I have a pale, smooth, shiny band of skin about two inches back from my entire front hairline.  I have no hair at my left temple and a few straggling hanger ons on at the right temple.  My eyebrows are almost completely gone, except for a few stray hairs.  I have no hair on my arms at all.  At my front hairline  I get inflammations (little red bumps like pimples) around the follicles, and white scaly things around the follicle.  My scalp itches, and I also get inflamed, tender spots that almost feel like a bruise.  My hair basically looks like a wig I'm wearing too far back on my head.  My dermatologist thought immediately that it was scarring alopecia, and later confirmed it from a biopsy of my frontal hairline.  I first suggested the diagnosis of FFA, which she agreed that was the most likely.  She also raised the possibility of Graham-Little-Piccardi-Lasseur Syndrome  which certainly sounds like a possibility based on my symptoms.