Replies to This Discussion

Permalink Reply by Celia on May 15, 2014 at 5:02am

Hi Kathy - welcome.  You can vent away on this site - it does help sometimes.  I was diagnosed over 2 years ago and in shock and disbelief I started  this forum. It's been very helpful to have such a supportive group of women to communicate with, and we are all learning from each other. My body hair is pretty non existent too but I think this goes with the territory as it were.  I am in UK and one of the best things I found was when I had eyebrow tattoos.  This made such a difference, but you need to research and get a talented tattoo artist.  I was fortunate in that I was recommended to Belinda Hale by Debs on this forum, and I'm going back after 15 months to have them touched up again.

I have had steroid injections but would not have any more as I now have a distinct concave line across my hairline and veins running vertically.  They did no good anyway.  There is a lot to read on this site.  There is a summary that was done by Debs which you will find useful. 

Hope you have a good day.

Permalink Reply by Anne Louise on May 15, 2014 at 9:23am

Hi Kathy, welcome to our group. I was diagnosed over 2 months and am still somewhat in shock and a bit of denial. This group Celia started has been a tremendous source of support, information and a place to vent. My eyebrows went first over the course of a year, but I thought it was due to thyroid issues. The disease seems to present a little differently in everyone, but losing bodily hair is not uncommon. The hair on my arms is nearly gone and I have no peach fuzz on my face. Wish I could redirect that to my armpits and legs which still need shaving! You've probably seen my post on eyebrow tattoos...they have made a world of difference for me. It was astounding to me just how devastating losing those two little patches of hair over my eyes was. With the tattoos I no longer obsess over that loss.

Permalink Reply by Alice on May 15, 2014 at 11:46am

Kathy, I am sorry to hear about your recent FFA diagnosis but think that your fears about something more going on my be unwarranted. Many of us, especially those who are post- menopausal, have lost body hair in addition to eyebrows and frontal hairline. I have lost all of my underarm hair, almost all of the hair on my legs, and the hair on my arms is very sparse. I used to shave my legs from the tops of my toes all the way up to what used to be a bikini line in my younger days and often wished I weren't so hairy. As my mother used to say, be careful what you wish for! 

Permalink Reply by Kathy on May 15, 2014 at 3:25pm

Thanks for the warm welcome! 

I'm curious to know if anyone has used a laser comb with any success?  I have one I bought for my husband and was thinking of giving it a go.  Also, I've seen that polysorbate 80 (an emulsifier used in many shampoos) has been used to help unclog hair follicles.  Wonder if that would help?  I'm waiting to see if I can start using the minoxidil after I see the Derm next week.  I don't want to shock my hairline by using too many things!  But maybe there's a regimen that could be experimented with.  The ointment does seem to be helping my eyebrows - I've seen some growth - altho mostly hairs that probably would have been groomed away before LOL. No matter - I'm just happy to see some hair again!

Permalink Reply by Annie on May 15, 2014 at 4:52pm

Kathy, welcome to our group.  I've been using the men's 5% minoxidil foam along with a topical steroid on my entire scalp as well as my eyebrows for a little over a year.  I apply the minoxidil in the morning and the topical steroid at night.  My existing hair has thickened up considerably, and I've managed to keep my eyebrows (so far!).  My doctor said that the minoxidil keeps the hairs that haven't been affected by the ffa poking through the skin, which helps to keep the entire area from scarring over. 

Permalink Reply by Alice on May 15, 2014 at 5:16pm

I started out using 2% minoxidil twice a day, since my scalp is easily irritated. After 3 mos, I switched to the 5%once a day, at night. I use topical betamethasone diproprionate in the morning. Both are liquid form, which I find easier to use than foam. The top of my hair is definitely thicker but the sides are still pretty thin.

I've had success using Elidel cream on my brows. They've grown in enough that I don't feel weird without makeup but definitely look better with some touching up. I find brown eyeshadow holds up better than pencils. Fortunately, I'm not yet at a point where I would consider hairpieces or tattoos. 

Permalink Reply by Classical Anne in NC mountains on May 15, 2014 at 5:46pm

Welcome, Kathy -- even though you'd really rather NOT be part of this group.  I have found these ladies to be so helpful, with all kinds of suggestions, and comfort when needed.  As Celia, Anne L, and Alice have already pointed out, everything that you were worried about actually is normal for FFA.  [I know, with FFA it's hard to think of anything as "normal"!].  Seems like with most folks, the eyebrows are the first sign.  Mine are now virtually nonexistent.  I was diagnosed by scalp biopsy 9 months ago, but my eyebrows had already been gone for a while.  After diagnosis, and starting on the series of scalp injections [about every 6 weeks], I was surprised one day to notice that I had lost ALL my arm hair, not a single one to be found!  Not even sure when that began, or how quickly it went.  To my frustration, the hair on my lower legs still refuses to fall out.  My dermatologist said, "How is that fair?" 

I think we all must have felt some degree of shock when we were first told about FFA.  Most of us had never heard of it, and wish we never had now.  You want to forget about the scary pictures online, but you can't help looking at them.  Then you start noticing everybody else's hairline -- I mean everybody!  I think it's all a natural part of the process.  I don't yet know if I'll ever truly 'accept' it.  But I can now say I've made my peace with it.  Stressing is definitely counterproductive!  Now I try to focus on one of the perks:  finding lovely scarves and accessories for everything in my closet.  Really takes my mind off the negative aspects and gives me a new goal.  Every day I look forward to the mailman delivering another small package, from the wealth of sources online.  And every day I look forward to reading new posts on this site, sharing ideas with others, and finding comfort in these new friends.  I hope that you will find relief for your fears, and all the support you need going thru this.

Best wishes,

Anne