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 Jules UK on August 26, 2013 at 3:47pm
It's encouraging to hear of Regaine's successes. However, I've been using it for around 7 weeks, to no effect so far, sadly. But my hair is thinning in new places. Fingers are still crossed though, and I'd be glad to participate in any research! Does anyone have any tips as to how best to apply Regaine? I part the hair and rub it in to about 2" back but so much seems to be taken up by hair before it reaches the scalp. Dr Harries said it is formulated to spread when it reaches warm skin. X
Comment by Maddy, California, U.S. on August 26, 2013 at 3:34pm

Hi, This is Sandy from California again. Forgot to say one thing. I have been using Latisse (bimatoprost ophthalmic solution) on my eyelashes and eyebrows ever since they starting looking sparse and so far, it has worked great. I still have decent eyebrow and my eyelashes are long! Anyway, it worked for me.

Comment by Polly UK on August 26, 2013 at 3:16pm
I'm sorry I forgot to add that I'm really glad I found this group and thank you all for sharing so much information x
Comment by Polly UK on August 26, 2013 at 3:08pm
Hi this is my first post! I was diagnosed with FFA a month ago but I'm sure I've had it for at least three years when my eyebrows started disappearing. I've just started on Hydroxychloroquine and applying Dermovate when my scalp isn't too sore. I've been prescribed iron tablets as levels were low in my recent blood tests and I'm also taking turmeric tablets.
I looked at Rogaine/Regaine in town last week but worried about the comments about blood pressure on the packaging as I'm on meds for hypertension. Would love to give it a try but maybe need to check first with Dermatologist or GP?
I've had some hair regrowth on my face in the pat few days - never thought I'd be pleased to have hairs sprouting from my chin or to have a moustache ;)
Comment by Maddy, California, U.S. on August 26, 2013 at 3:01pm

Hi everyone, This is Sandy from California in the US. I have been reading all of your comments about Rogaine and just started using it last night. I will apply it twice a day and will let you all know if I see any difference in a few weeks. I would love to participate in any research that takes place. Thank you all for your posts. I am not sure what I would do without all of you.

P.S. I also just got two top pieces made. I went for the fitting yesterday, and I have to say they looked pretty good and very hard to tell they are not my real hair. I was pleasantly surprised. She has to add a few final touches to them and I pick them up this Thursday. Should be interesting.

Comment by Brenda, IL US on August 26, 2013 at 1:17pm

Rogaine does work. I used it for six months last year until my new hairstylist advised me to stop using it in January. By May all the hair that had grown was gone. I wish i hadn't stopped. I'm not regrowing the hair in those places now. I was using the womens 2% then. Now i'm using 5%.

Comment by Annie on August 26, 2013 at 1:09pm

Hi all, just catching up on the posts from the last few days. I agree that the Rogaine research regarding FFA is a good idea. It is true that hair can't be regrown in the scarred areas, but perhaps the scarring won't occur as fast if the Rogaine keeps more hairs poking through. I also agree that everyone diagnosed with FFA should start using Rogaine immediately. I honestly only hoped to thicken up my existing hair and was very surprised to see the wispy hairs around my face were growing back. It seems like we're all playing a waiting game with the plaquenil, but I noticed new hairs growing within 2 weeks of starting Rogaine. At least it helped me to feel hopeful.

Comment by Pam on August 26, 2013 at 3:11am

Thank you for your very helpful ideas about starting to wear my wig. I am going to go out in it very soon! It is s synthetic one which I got from Trendco in London, and it has a wig cap which you pull over your natural hair, and then the wig just pulls on over that (so I hope it stays on!). I am interested too inhearing that Kath has got a hairpiece. How does that fix on? I would like to get one, but it seems a bit tricky with the type of frontal hairloss that I have got.
Thank you for your support, it means a lot to me when I am so devastated by this condition at the moment, as it seems to be getting worse. I think that when it was first diagnosed I still looked OK and was somewhat in denial of what could happen, and I didnt want the bother of using Regaine every day with only a slight chance it might help.

Comment by Kath UK on August 25, 2013 at 5:21pm

Pam - about wearing your wig - I would agree with Debs about taking it gradually. You could try just pottering in the garden for an hour in your wig and then maybe a take a trip to the shops somewhere you don't usually meet people you know.
But honestly if you do meet anyone they're most likely just to think you've had your hair restyled and tell you it looks nice.
I went to a big family reunion at the weekend (wearing my hair piece) and several cousins I hadn't seen for years said I was 'looking good'. I felt a lot better about photos knowing I didn't have to wear a hat or a hairband as I've had to do in the last year or so.
People are not all that observant, I've found. It's just that you are very conscious at first that you're wearing a wig but you do get used to it and it's a great confidence- booster.

Comment by Liz on August 25, 2013 at 3:21pm

Debs, when you started wearing a wig did you get a headache? I get a headache after an hour or so which goes within a minute of taking the wig off, so I think the wig might be pressing on a nerve. Do you wear a wig cap underneath?
xx

 

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