Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 601
Latest Activity: Jul 8, 2023

Discussion Forum

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by christiekd on July 30, 2013 at 2:08pm

Debs, I use the rogaine last after clobetesol or protopic.

Carol, I'm glad you discovered Smart Brow. I can even go swimming with it on and it doesn't come off. And sometimes, if I don't take it off at night, it stays on the next day too.

My derm is very aggressive with this disease. If this was not working for me, he told me he has other drugs that we can try. Although he says the other drugs have a lot more side effects than what I am currently on. I don't know what the other drugs are, but I am really hoping I don't find out. I'm hoping I will continue to have success with what I am currently on.

Comment by Debs on July 28, 2013 at 2:23pm

Christie thanks for your treatment regime. Can I ask please do you apply the rogaine before or after the clobetasol ? XXX

Comment by Annie on July 26, 2013 at 4:32pm

I use the men's strength Rogaine per my doctor's advice. He also said that the foam version only needs to be applied once a day after the first 6 weeks of use. You need to be prepared for extra shedding from the 2nd through 6th week when you first start using it. This a good sign that the new growth process is taking place. My hair loss probably doubled during that time.

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.

 

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