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Comment by April on July 26, 2013 at 3:21pm

For you ladies using Rogaine, are you using the women's strength or the men's strength? Thanks!

Comment by Annie on July 26, 2013 at 1:46pm

I've been using Rogaine for 3 months, and it has has made my eyelashes thicker & longer even though I use it only on my scalp & eyebrows. I also notice that I have to shave my legs more often (which I could have lived without). I'd also lost a lot of the hair on my left arm, which is starting to regrow. I am definitely a fan of Rogaine. I just wish I'd started using it sooner. I'm growing wispy hairs around my face that I thought the FFA had taken.

Comment by christiekd on July 26, 2013 at 1:39pm

My sister noticed the same about my arms when we travelled over spring break. Right now, I do have more hair in my arms as well.

With protopic, I do use it on my hairline trying not to get too much on my hair itself. Between that and rogaine, my hair does feel a bit greasy, but because I have curly hair, it's isn't too bad.

Comment by christiekd on July 26, 2013 at 12:40pm

Pam, I'm not totally sure if the rogaine works, but I do see hair regrowth where I had lost some recently. It's not coming in fully, just sparsely, but I figure that it must be helping where I haven't lost hair yet and perhaps it helps where I have cut the inflammation short and the follicle hasn't scarred yet. In terms of eyebrows, I think the rogaine helps as I have been able to regrow them back. By the way, I have very blond eyebrows, so I tint them every three weeks or so, which really helps the illusion of fuller brows.

Finally, rapid lash is for both eyebrows and eyelashes. I haven't used it much on eyelashes, but it seems to be working for my brows.

Also, I can tell when I am doing better with this disease because I grow more hair all over - arms, legs, etc. I find I have to shave my legs way more frequently right now. I dont think I shaved them at all this past winter. Just thought I would add that in.

Christie

Comment by Kath UK on July 26, 2013 at 11:27am

About wearing wigs - Debs has given excellent information.
I wear what I suppose is a 3/4 wig - it covers my forehead and mixes in with my own hair at the back of my head. Works well for me. I had my own hair highlighted (my hairdresser was very careful) so my hair matches the piece.
I wear an Ellen Wille piece which cost about £135. Bought two at a wig store - not online but I'd try online next time. They are lace front, acrylic and look natural and should last 4 or 5 months after which I believe I could use one for swimming (haven't tried that yet....) The piece attaches to my forehead with sticky tape and has 3 clips at the back which clip into my own hair. Comfortable to wear and I brush my own fringe (bangs) back when I put on the piece.
The wigsupport.com website is very helpful and will give suggestions on wigs and wig care. So should the wig store.

Comment by PamW San Diego, CA, USA on July 26, 2013 at 11:17am

Christie, do you think Rogaine has helped you regain any hair? Also, would the rapid lash be appropriate for eyelashes?

Comment by Annie on July 26, 2013 at 10:53am

Christie, thanks for all your wonderful information. I'm happy you had a good report from your doctor. I agree that FFA takes a lot of effort, but it sounds like it's paying off for you. Being recently diagnosed with FFA (March 14), it gives me hope. I've already checked out Smart Brow at Dermstore. My eyebrows haven't been affected yet, but they've always been a little sparse. By the way there's a 10% discount & free shopping if you use the promo code BZDISCOUNT.

Comment by christiekd on July 26, 2013 at 9:41am

I wanted to update you all. For those of you who don't know. I was diagnosed with FFA 2 1/2 years ago, but I really have had it for 4 years looking back on when my hair loss started and all the misdiagnoses until it was confirmed FFA. I did really well when I first started treatment for a year or so, then last year I had some stressful things happen in my life and had a relapse with lots of inflammation, itching and hair loss. It has taken a year to put things back to right but I think I did it.

I had my 3 month appt with my derm yesterday and things went well! I have felt really good in the past month or so. Right now I don't have any more burning and itching and my hair loss has stopped. My doctor didn't see any inflammation and told me not to change anything I am doing, and he would see me in 6 months. He was very happy with where I am at right now. So, I wanted to let everyone know exactly what I am doing.

Clobetesol - use it 2x per day for 2 weeks, then decrease to weekends only for 5 weeks, then repeat cycle.

protopic - apply 2x daily during the week when not using clobetesol

rogaine - mens strength. use 2x per day to hairline and eyebrows.

rapidlash - 1x at night to eyebrows

tretinoin (retin A)- apply to hairline and eyebrows

minocycline - (instead of doxycyline) used for 8 months, just tapered off and am no longer taking any antibiotics. will keep it on the back burner in case things go south again.

tumeric - 2x per day.

plaquenil - 2x per day.

My eyebrows have come back a bit, however, my left one is a little more sparse than my right. And both need daily enhancement. I am using a great product that I just found and even my derm could not tell that I had used makeup on them. It is called Smart Brow. It really works to thicken up the hair you have left to make a complete brow. I got it online at Dermstore.com.

As you can see, my daily regimine is tough. But I do it faithfully along with lots of exercise and positive thinking. And hopefully, I will stay this way for a long time. My derm calls me his "model patient" because twice I have been able to halt the hair loss progression (at least for a while). We will see how long this lasts. Especially since we are not certain what causes things to flare up again.

I hope this helps.

Christie

Comment by Debs on July 26, 2013 at 6:59am

WIGS - www.wigsupport.com - this site is by women with hairloss that wear wigs. They post photos of their wigs and give advise on everything wig related.

Synthetic wigs look natural and are easier to maintain than human hair wigs. A 'cheap' wig would be something less than 100 dollars or 80 british pounds. You can get very cheap wigs that will not be comfortable/last long. A nice synthetic wig by a brand like: JON RENAU, RAQUEL WELCH, REVLON, AMORE, GABOR, HENRY MARGU, ELLEN WILLE will cost between £125 - £250 this will look natural, be comfortable and should last approx 4-6 months. try wigs on in a wig shop and then buy online because it is cheaper. In the UK we get the VAT deducted as we are medical users.

UK website I use is www.buywigs.co.uk

My recommendation is check out synthetic wigs with lacefronts (this makes your hairline look natural) in the brands I have listed above.

You dont need to cut your own hair, just pin it up underneath your wig. Wash wigs in cold water with wig shampoo and wig conditioner. Synthetics regain their style as they dry you don't need to style them.

Comment by Brenda, IL US on July 25, 2013 at 11:13pm

Thanks for thinking of me Carol. It had to have helped because i've been happy all day! The weather is beautiful too. I looked at some wig sites that were mentioned on here. Think i will find a shop when i'm in St Louis tuesday to get some advice. This site is absolutely wonderful. Almost back to my old self (minus lots of hair). Haha

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