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Comment by Kristen P on August 14, 2014 at 5:17pm

Hey all! Thought I'd comment since I am in America. I'm being treated at Northwestern Medical Faculty Foundation in Chicago. I started steroid injections in January. I received them in Jan, March, and last week. I had an appointment in May but things were stable so they skipped injections (since they have side effects, as mentioned.) I noticed a flare up late July and she did document a little additional loss. I go back in six weeks. She calls FFA the bane of her (and many dermatologists) existence, since little is known about what causes it and there is no cure.

I am not taking oral medication. I use Lumigan (which is typically prescribed for glaucoma) on my eyebrows because it has the same active ingredient as Latisse...but insurance will cover it. My eyebrows seem okay. I have used both Fluocinonide .05% and Betamethasone Dipropionate .05% on my hairline. I haven't seen much of a difference in them but find the BetaDi has a more offensive smell. 

I am a pretty young "victim" of FFA. I would say it started when I was 34/35, but wasn't officially diagnosed until last year, right after I turned 36. I am not pre-menopausal. I had a DIFFERENT extremely rare skin disease when I was younger. I was hospitalized for chronic bullous dermatosis of childhood when I was 8 years old, and received treatment for it for about 1.5 years after.

I am very fair, with English, Irish, and Swedish lineage, which seems to be pretty common among FFA patients. My derm did mention they are now seeing it in all races and also in men. Maybe now that men are getting diagnosed we'll see a better focus on research! :)

Good luck to you all.

Comment by Jean on August 14, 2014 at 2:44pm

Forgot to mention in the email exchange with Debs (huge thanks for the brilliant fact sheet, Debs) that my derm has recently been to America to check out any new thinking on FFA.  She said that whatever treatment sufferers are using, it should be changed every 6 months and this has the most positive results.  No absolute model for success though I'm afraid!

Love Jean

Comment by Mary on August 14, 2014 at 2:20pm

Seen consultant today. Continue on anti malarial tablets and dermovate cream. Hair loss appears to not to have changed over last six months. Good news.

Comment by Debs on August 14, 2014 at 1:31pm

Marian I suggest you pose this question on www.wigsupport.com this site is based in the USA so the ladies can definitely help you find replacement hair in your area.

Comment by Pam on August 14, 2014 at 10:40am

My hairpiece was done by Rob Davidson-Lamb at Barefaced in Cheltenham Gloucestershire UK.

He has got a website with all his details. He does some things over the internet, and I guess it could be possible for him to order one if you could measure it youself and match the colour, and then fit it, but better for him to do it in person!

Comment by jess on August 14, 2014 at 9:15am

Liz, what hairpiece are you using?  Is it one like Pam's?  I have still not found something yet.  I am in Kentucky....

Comment by Marian on August 13, 2014 at 10:07am

Thanks Rita! I will call when I get back to town this week. I am also interested in the stick on ones that a couple of the UK ladies had made, I have a whole lot of loss in temple area as well as bang. Sounds like I'll be wearing a wig quilt with all the bits but can't stomach the full wig alternative. Does anyone know where these "side burns"can be found? Still trying all the meds but need a back up plan.
Ps I hate wind!

Comment by Rita - Canada on August 12, 2014 at 7:10pm

Marian, I live in Ontario & purchased the hairpiece from Rochetti's. It has 4 clips on top of head. She cut it according to my length & a little bangs into it. Mine is titled 'EasiPartHd' (heat difiant clip in crown volumizer)  on the box it has a website with a toll free # in Canada and can perhaps guide you to a place near you.  www.easihair.com   Hope this helps.

Comment by Marian on August 12, 2014 at 5:35pm

Rita-what kind of hairpiece did you get and where did you purchase it from? I am in Western Canada.

Comment by CJ on August 12, 2014 at 4:10pm

Thanks for replying all it is good to hear others stories and treatments etc.

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