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 Rita - Canada on September 25, 2013 at 9:22pm

Debs,Carol- I went out to look at synthetic wigs & the store really liked and promoted the Jon Reneau synthetic. I tried to find more info on wig support but came up empty on what I was looking for and that is the way the wig is made. she mentioned something about hand .... and what would you suggest for the construction of the wig, please & thanks?

Comment by Polly UK on September 24, 2013 at 6:35pm
Hi terry - thanks for the Regaine/Rogaine info. If it works I will be interested in finding it cheaper online as I bought mine in Boots!! I think I've seen it cheaper on Amazon?
I asked my derm if he thought it was ok for me to use it as it says not to if you are on drugs to lower BP and I take 3 different tablets daily. He didn't think much would be absorbed through the scalp so I should be ok....but I'm not sure if he thought I was going to try the women's 2% version so I am going to keep a check on my BP whilst using it just in case.
Comment by Jules UK on September 24, 2013 at 10:25am
I'm pleased that Regaine is helping many of you; is there anyone who hasn't had success with it? I'm afraid it may be responsible for my increased hairloss and after 3 months, there's no sign of it helping at all. I know it doesn't work for everyone so maybe I'm just unlucky. I emailed Dr Harries yesterday for advice. No reply yet. X
Comment by Debs on September 24, 2013 at 4:43am

Dee, I sometimes come up to Edinburgh, Glasgow and Aberdeen... If you are in/near any of those cities we can meet up for a coffee and chat. xx

Comment by Polly UK on September 23, 2013 at 5:02pm
I bought Regaine for men extra strength scalp solution on Sunday but reading on here I think I've got the wrong thing? As my inflammation is down at the moment I thought I'd try to thicken my hairline and see if it helps my eyebrows to grow back. I was having them tattooed last week but had to have a patch test first as I'm allergic to nickel so now have to wait a couple of weeks.
Comment by Polly UK on September 23, 2013 at 4:56pm
Hi Paula, it's interesting you are only taking one Plaquenil tablet daily and it seems to be working as I thought I had to take two a day for it to work. I'm struggling with side effects when taking two but no problems with one! I've been taking it for five weeks and my inflammation seems less at the moment but it could be Dermovate and/or turmeric helping too.
Comment by dee on September 23, 2013 at 3:06pm

I would love to be able to meet up with someone, anyone who has FFA. I'm on such a bundle of medication just now and feeling quite isolated. But I don't suppose there is anyone up here in the wilds of the Scottish Highlands. I hope you all have a productive and supportive get- together. Please post anything interesting that is shared. xxxx

Comment by dee on September 23, 2013 at 3:02pm

Comment by Celia on September 23, 2013 at 1:45pm

Hi Terry - are you close to London and if so perhaps able to join us for a get together on 9th October. e mail celiareeve@hotmail.com for directions if you think this might be possible. Best wishes !

Comment by Paula uk on September 23, 2013 at 11:01am
Hi Terry,
Thanks for the info, I take one plaquenil 200mg,I use clobestol foam shampoo each morning.I use Elocon steroid cream on my eyebrows and elocon scalp lotion on my scalp each evening.Of late I have reduced my use of the steroid cream and lotion as the inflammation seemed to have reduced considerably and I guessed it was from the plaquenil.so at the moment I am using them every 2-3 days.I'll keep a close eye on my scalp just in case.
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