Replies to This Discussion

Permalink Reply by Liz on September 2, 2013 at 7:56am

Hi.
I have lost hair from my eyebrows, presently the outer half. I have also lost the hair from my arms and the tiny bits that I do have still growing there I can just pull out without any pain. I can also pull the hair from my temples without feeling a thing. However I havent lost any leg hair as yet! Hope that helps in some way.
Liz
x

Permalink Reply by Chrisy, MA USA on September 2, 2013 at 10:30am

Hey!! As a Mediterranean I always been very hairy. I remember I used to go for arm hair removal when younger. I definitely see that less and less hair are there in my arms. They are very sparse and the ones I still have I touch them and they magically disappear with no pain. Also my eyebrows, are almost gone, my eyelashes are next. Still have some but they are falling a lot. Makes me wondering if plaquenil works at all. I would think that I won't see any hair loss from everywhere, right???

Permalink Reply by Polly UK on September 2, 2013 at 10:37am

Hi Michelle

I was only diagnosed a few weeks ago with FFA but lost my eyebrows 2-3 years ago. I also lost hairs from my chin and upper lip, the latter two have started to return which I'm not overly pleased about but thought it might be a good sign. Also some stray hairs appearing in the eyebrow area. I am having my eyebrows tattooed by a girl from Medicos in London who comes to my local Saks salon every couple months. Has anyone from the UK been to Medicos?

I haven't lost the hair from arms and legs but they are less thick than they used to be.

I started taking Hydroxychloroquine 11 days ago and have been applying Dermovate scalp lotion for about six weeks. I have lost 1-2 inches from my front hairline from ear to ear. My head felt very hot yesterday evening and a lot of hair fell out this morning!

My hairdresser thickened my fringe a few weeks ago by bringing more hair forward but that is thinning very quickly and I think she may have to take it from even further back very soon.

I agree with Terry UK that it would be wise to get a diagnosis ASAP so you can start on a course of treatment suitable for the type of Alopecia you have.

Polly x

Permalink Reply by Debs on September 3, 2013 at 2:55am

Polly, I am also in the UK... I use Belinda Hayle in Chertsey, Surrey for my eyebrows and my eyelash enhancements. She is called the eyebrow queen of Surrey. She is an extremely skilled person and people actually fly to the UK to be treated by her. She is very gentle and reassuring and has a real artists eye when working. Before you go to this clinic in London please check Belinda out. Is is essential to get the most skilled person to do semi permenant makeup because getting the correct colour (so it still looks natural when it starts to fade with time) and the right shape for your face is so important.

www.belindahayle.com 07976 440804

I love the work Belinda has done for me. It really has transformed my face and I get lots of complements about my eyebrows now.

Permalink Reply by Polly UK on September 6, 2013 at 8:43pm

Hi Debs, thanks for the info about Belinda Hayle, she sounds great but difficult for me to get to as I've lost my confidence driving apart from local trips! I have decided to go to my local salon which is familiar to me and apparently the girls from Medicos are all very good.
You have posted a lot of very interesting and useful tips including turmeric which I've now been taking for a few weeks and the oils which I've bought from Amazon.

Thank you!

Polly

Permalink Reply by Kath UK on September 2, 2013 at 12:28pm

Hi Michelle,
You might need to have a biopsy to find out if you have got FFA - your dermatologist can arrange for one.
I lost the hair on my arms and legs first, then eyebrows got very thin and then my hairline started to recede and now it's two and a half inches back and I have some hairloss at the back of my neck too.
Hope you find this group as helpful and supportive as I do!
Kath xx

Permalink Reply by LittleRhody on September 2, 2013 at 4:42pm

Hi Michele. I first noticed the hair loss on my eyebrows. Than my hair line on my head and my arms and legs. My arms are a smooth as a babies bottom. I'm not complaining about that. I love the smooth skin on my legs and arms. LOL. I could even be fine with no eyebrows. The hair loss on my head though I hate it.

My diagnosis is still kinda unknown. I had a biopsy done and it came back inconclusive. My doctor is treating me for FFA. By everything I have read this is what I have. It is pretty bleak. It seems there is no cause for why anyone gets this condition and no known cure. It sounds like you have FFA. Keep me up to date with your progress. I am curious. It is good to get lots of opinions on our condition. Right now I am using Latisse on my eyebrows and a topical steroid cream on my hair line. Good luck.

Permalink Reply by Sam on September 2, 2013 at 10:03pm

Hi Michele, I have recently been diagnosed with FFA. I noticed my eyebrows thinning first and then realized my arms were pretty smooth, which I thought was pretty cool until I realized my hair was thinning out too. Now I notice my legs are getting smoother too. I had the biopsy recently to confirm FFA and almost wish I didn't because it seems that there is more loss since I did it. Could be a coincidence but I worry that may have triggered more. My doctor said that it is unlikely, however, larger traumas, such as face lifts, eye lid lifts, etc. have been thought to trigger it. Good luck!

Permalink Reply by Annie on September 3, 2013 at 11:09am

Hi from Annie in the US, I have lost hair on my arms as well, mostly the left one, and the hair on my right arm is getting thinner. I remember feeling like something was crawling on my arms for a couple months before the hair started to disappear. My legs and eyebrows haven't been affected yet.

Permalink Reply by Alice on September 4, 2013 at 4:20pm

I've lost almost all of my underarm hair, and most of the hair on my legs. I'm not complaining about either of those! The hair on my arms is lighter and finer. I had lost about half of one brow, but most of it grew back eith Elidel cream. My brows, scalp and one leg all feel itchy. My FFA dx was confirmed with a scalp biopsy a couple of years ago. Most of mt hairloss is along the temples.

Permalink Reply by Brenda, IL US on September 6, 2013 at 11:44am

Hi! I did't realize that i had lost the hair on my arms til i read your question! I only shave my knees and around your my ankles anymore. But i have fine blonde hair on my cheeks! It stops where all the hair loss starts. Makes me crazy!!! Oh, my eyebrows have pretty much fallen out from nose to arch. Gotta laugh or i'm gonna scream!!! :)

Permalink Reply by LittleRhody on September 6, 2013 at 6:42pm

Brenda, I was just reading your post. It made me laugh. I had the same experience. It just sneaks up on you. One minute the hair is there and the next it seems to have disappeared. It seems like everyone on this website that has FFA has lost their hair in different ways. Some start with eyebrows. Some start with leg and arm hair. This Disease is just so different for everyone. No wonder the doctors are baffled on how to treat it. Good luck.

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