Replies to This Discussion

Permalink Reply by DragonandFox on June 16, 2015 at 5:26pm

I am wondering about some hairstyle options too for people with FFA. I've been getting treatment since Feb. 2015 and though things are not horrendous, even with the steroid shots monthly, foam, lotion and acupuncture every week, my hair is thinning in the front. the inflammation only recently started getting better, but I think it must be because I have new acupuncturist because right after I saw him the inflammation went way down. 

Anyway, went to see my hair dresser who is my friend and she noticed how drastically reduced my hair has become.  She changed it up a little, but, still, I can see how thin.  If I can't reverse this thing it won't be long for the worst and I'm really scared.

Permalink Reply by Lo on June 16, 2015 at 6:18pm

Hi there. Sorry to hear about the thinning. I am not sure if it is the FFA or not, but I've found that along with the recession also comes some texture differences in my hair. I've always had thinner hair, but the styles I chose made t look fuller. That is getting a little harder. I've uploaded a picture that was taken yesterday. It is a bit dark... But you get the idea of my haircut. He (my hairdresser) literally is taking hair from beyond the hairline and pulling it forward. It works for now to hide the larger areas of loss above my ears and at my temples. I also have glue in pieces for those areas but am not wearing them in this photo. We do what it takes... And once we sort it out, it seems to get better. Stay positive... And share a recent picture if you don't mind.

Permalink Reply by Jen S. on June 20, 2015 at 8:00am

Cute haircut. Looks great on you.

Permalink Reply by MnM on June 18, 2015 at 12:42pm

Hi there! What's working for me right now is shoulder length hair with lots of layers. I have choppy layers around my face so that if I tuck my hair behind my ears shorter layers fall forward and hide my temples. I never wear my hair up except for a low ponytail. With a low ponytail my front layers hide my temples. So far my front hairline is acceptable, I don't need bangs just yet, but the hair line is uneven from my hair loss. I use a volumizer in front to add texture and pull it forward a bit with an off center part. On a really bad day I use something call Hair Veil on my front hairline, which is a powder makeup that helps to hide hair loss. Hope this helps! Good luck!

Permalink Reply by Lo on June 18, 2015 at 3:12pm

Dragon fox...Are you taking Plaquenil?

Permalink Reply by DragonandFox on June 28, 2015 at 1:34pm

No Lo. I am not.  I was getting the Steroid shots in my Dr's office once a month (have no idea the name of the steroid) and I was applying Clobetasol nightly. About a month ago, I stopped applying the Clobetasol because, I may have imagined it, but it seemed like t might be making it worse. 

Serendipitously, I was assigned a different Acupuncturist since the other left the practice and WOW!!  2 weeks after this new guys treatment, the inflammation started to go away!!  I went to my monthly Dr's visit and he told me it was good timing because we need to take a break after 6 months of shots and that my scalp looks good, though I lost more hair last month.  But the premise of FFA is the hair will stop falling out if the follicles are still alive (mine supposedly were reported as not being dead after the biopsy in Jan.) and the inflammation is eliminated. 

Apparently, not ALL Acupuncture is the same and certainly, not all practitioners are.  Dr J explained to me to the theory of the problem.  he's going to be in China for a month but his replacement knows how to further treat me.  I hope it will be ok, but look forward to seeing Dr J again in August!!  I forgot to ask him if he will discuss Frontal Fibrosing Alopecia with Chinese acupuncture masters.