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: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

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

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Comment by christiekd on August 14, 2013 at 12:48pm

Linda, if you want to try it on your eyebrows, just use a q-tip to apply the Rogaine. It doesn't drip at all because the cotton on the q-tip absorbs some of the solution. I find Rogaine has helped my eyebrows the most.

Comment by Pam on August 14, 2013 at 11:37am

Thank you Annie for your comments on using Rogaine. Also thank you to everyone else for such helpful advice. I am going to Trendco in London tomorrow to have a consultation (thanks again to all your advice and lovely pics of the new wig!) - it has taken me a lot of courage to get to this stage, and all your support has helped tremendously.

Comment by Annie on August 14, 2013 at 11:26am

Alice, the Rogaine has regrown most of the wispy hairs around the sides of my face that I thought the FFA had taken as well as thickening up areas around the bare spots. I've had the best results on the right side of my face where the FFA hasn't been quite as aggressive. It's true that you can't regrow hair in the scarred areas, but, for whatever reason, the hair follicles next to the sides of my face haven't scarred over. I decided to try Rogaine because of all the postings I've read about, the ones using it have had the best results of slowing down the progression of FFA. The derm that diagnosed me said Rogaine wouldn't help, but the one I went to for a 2nd opinion said I should try it. He suggested the 5% solution generic version. I get the foam version at Sam's in the US for about $34 for a 4-month supply.
Also, the new hairs that are coming in are the same color as the surrounding hairs and a little finer in texture.

Comment by Debs on August 14, 2013 at 9:44am

Chrisy, I don't get any itching either but my derm has asked me to use it, it is another way of trying to get the inflammation under control. I use disposable plastic gloves when handling Dermovate because it is very powerful and I don't want to get it on any other part of me, or indeed anybody else or my pets. xxx

Comment by Chrisy, MA USA on August 14, 2013 at 9:19am
May I ask what is the purpose of clobetesol? My derm prescribed clobetesol shampoo for the itching part but I only used it once bc I don't really have any itching. Does it help to calm down the inflammation as well??
Comment by christiekd on August 14, 2013 at 7:35am

About Benadryl - I sometimes have trouble sleeping as well, so I will break a pink benadryl pill in half and take a half a dose. This is enough to get me through. I also don't feel so bad taking a sleep aid.

For Rogaine - I think that in combination with our other meds, it is beneficial to use rogaine. When you can calm the inflammation with clobetesol, there are hair follicles that haven't burned out yet and scarred over, and the rogaine helps those hairs to grow back.

Comment by Pam on August 14, 2013 at 3:15am

Regarding Rogaine - I have been told that it is not really effective for alopecia? If it was, surely everyone would be using it? I bought some in desperation, but haven`t used it, as my dermotologist said it was unlikely to be of any use. Any feedback on this?

Comment by Alice on August 13, 2013 at 5:59pm

Annie, are you seeing new growth where there has been hairloss along the front and sides, or only where you haven't lost hair yet? Are you using the men's or women's strength. I haven't taken the Rogaine plunge yet but am considering it. Also, does the new hair have the same texture and color as the rest of your hair? The new hairs I sprouted on top while taking spironolactone is drier, grayer, and frizzier than the rest of my hair.

Comment by Annie on August 13, 2013 at 5:24pm

Annie, I started out using the Rogaine on my eyebrows and around my face and above my ears going back about 3 inches about 4 months ago. I was so pleased with the new growth after 6 weeks that I started using it all over my head. My hairdresser says she can see more new hairs sprouting every time I go in for my 6 week cut & color.

Comment by Celia on August 13, 2013 at 6:29am

Hello all - I have been a bit quiet for a while. Enjoying the proper summer we are having in the UK, loving the grandchildren, seeing friends, creating our new garden, working out in the gym, country walks - what more could I want ? !! XX

 

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