Replies to This Discussion

Permalink Reply by LoriO on August 28, 2015 at 12:55am

My dermatologist looked at my hairline for about 30 seconds and said "you have FFA."   There was no other diagnostic done. I've wondered if I should be upset about that or happy not to have a biopsy.

I can't say that the hair in the active zone is any different.  Maybe it's kind of wavy/kinky (I have stick straight hair) but I don't know if that's just the normal change with going gray.

Permalink Reply by Chris on August 28, 2015 at 1:54am

My biopsy confirmed that the follicles were scarred by the inflammation , and then the DX of FFA is made clinically based on the pattern of loss. My frontal hairline in the area of attack is thinner and straighter. I don't know about my sebaceous glands. They took the biopsy from my frontal hairline.

Permalink Reply by Lo on August 28, 2015 at 11:54am

Biopsy confirmed FFA... although when my prior derm diagnosed, she said LPP/FFA... so I said, "Do I have both?"  And her answer was kind of vague, in that she said they cannot be differentiated under a microscope.  But my new derm said FFA - just based on biopsy, and how it is presenting itself (above ears, at temples, and at hairline).  And yes, the hair along the active edge is a bit "wirey"... if that makes sense.  I use argon oil to try to smooth.  Ahhh... a day in the life!

Permalink Reply by Classical Anne in NC mountains on August 28, 2015 at 4:12pm

Good questions!  I never actually saw my biopsy results, but was told over the phone "Frontal Fibrosing Alopecia".  Weirdly enough, I also had a diagnosis of "Cranial Ringworm" from the same biopsy!  My derm said I was her first patient with FFA and the only adult she'd ever seen with ringworm.  No idea how that came about, though possibly thru one of my grandchildren.  Anyway, the biopsy was a small chunk of scalp [I believe it took 5 or 6 stitches to close] from just a few hairs back from my widow's peak.  I also don't recall her saying anything about the sebaceous glands at that time, but from my reading, it's clear that they had died.  And when I mentioned that some on the forum had talked of possible hair transplants, she said she did not believe that could successfully be done, due to the cicatricial scarring.  I should add that she was very intrigued with this disease and did a lot of research after my biopsy.

As for the condition of the frontal hair, yes brittle, inelastic, and noticeably thinner strands.  Some light, some dark; some straight, some curly.  In other words, totally BIZARRE!  

Permalink Reply by Jen S. on August 31, 2015 at 2:56pm

Yep. Me too.

Permalink Reply by Jules Australia on September 3, 2015 at 9:59am

Hi Sad&Unsure, yes my hair became wierdly course/kinkey inelastic at onset of lpp/ffa, accompanied by pain tenderness & itchiness of my scalp in areas of bizarre texture changes. My hair previously (when normal) was quite wavy/curly but had a softer more elastic texture. It seemed to become quite kinkey in the front (individual shafts appeared dystrophic -rough twisted like with many small bumps along them); my hair virtually changed to this txture diffusely over my scalp. I did a lot of researchwhen it first started (as my first derm seemed to have no clue as to what was going on;-it was literally a nightmare). I believe the hair change was due to a hairshaft disorder called "acquired pili torti" due to fibrosis in the hair follicle which is seen in cicatricial alopecia, especially lichen planopilaris. My biopsy reported that i had " inflammation & fibrosis inat least half of the follicles (in the sample taken) but that the follicles were still intact (meaning no sebaceous gland loss), &also said the changes were indicative of an early scarring alopecia, lichen planopilaris/frontal fibrosing alopecia". My bipsy was taken just back a little from the frontal hairline,so this indicates ffa. I definitely have classic lpp also as my symptons ofpain itchiness creepy crawly feelings have been diffuse over most of scalp & hair txture change also.

Permalink Reply by sadandunsure on September 3, 2015 at 4:25pm

Hey Jules, when was your biopsy? Have you lost that frizzy hair or is it still there? Has the frizziness spread? Has it gotten better? There is definitely a "halo" of frizzy broken hair in my perimeter, it's like a wall that outlines where future hairloss will take place, I'd love to hang onto it and protect the hair behind it. But i have zero symptoms and the one round of injections i had made my hair drop out and cause skin atrophy, so I'm not inclined to treat with steriods (topical nor injected)

Permalink Reply by Jules Australia on September 3, 2015 at 7:15pm

Hi again S&U

Permalink Reply by Jules Australia on September 5, 2015 at 7:06pm

Hi Sad&Unsure,  My biopsy was done July 2013 (scalp pain came on Sept 2012, along with &extreme hair txture change & lossfrom frontal&bi temporal hairline).  Up until now i have had loss all around & behind/in front ears also. My hair def has been improving back to a softer, more elastic texture over last few months. I still get scalp tenderness in various areas & some itchiness in front. I had quite thick hair originally so i still not at stage of needing to wear a hairpiece. In the areas where i've had the most  thinning were those in which my hair became quite kinky frizzy, so as its changing to a softer more eastic txtr i really have no idea if the disease is coming to an end stage, or maybe just a temporary reprieve, who knows; it is such a baffling disease. I still have some tenderness/itchiness (some days worse than others) & after the sudden initial loss from the front when pain symptons hair changes happened in sept 2012 the loss over the past 3 years has been very slow. After biop in july2013 i was presc a corticosteroid cream by Derm but it was pretty useless so i stopped using it. Lost all confidence in specialists treating this ghastly disease, did my own research, decided not to use any treatment. 

Permalink Reply by ammie on September 8, 2015 at 9:34pm

My biopsy came back as lichen planopilaris with mild inflammation. The pattern of hair loss is indicative of FFA. I have lost my widow's peak, sideburns and hair around my temples. The dermatologist referred me to a scarring alopecia specialist. I am curious to see what she says. Her calendar was booked months in advance. My appointment isn't until November.