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 Blondie on May 7, 2015 at 12:48pm
When I first went to my Derm my head was burning and my hairline was receding.. He gave me steroid jabs ..and put me on Planquenil and Toplical ointment ..he recommended Regaine and tumeric
..5 months on the burning rash and spots have disappeared , my hair loss had stopped and I feel great.. I do not feel like I am putting myself through anything I am just treating an ailment..it may be a great big coincidence ..but I know I feel a whole lot better now I am doing something than I did when I did nothing and hoped it would not get worse..if I had cancer I would get treatment so I am getting treatment for this...I also eat healthily and exercise but I was doing that before and I got FFA so that didn't help..I think we all have to do what seems right for us ..but it's certainly working for me and there is no evidence as to what causes it
Comment by Sad in chicago on May 7, 2015 at 12:27pm

Ladies, I really don't understand why you put your bodies through all these wierd medications and toxic stuff.  Isn't it bad enough that we have been afflicted with this ridiculous condition?  My derm tells me that all the meds you are trying have no evidence of working, gave me the same options, but I took a pass.  I am doing my best to be healthy, eat right and exercise (although always a problem at the gym with the way I look!!!!!), and just get through this and try to enjoy life as best I can and be thankful it is not terminal or something really awful.  With my wiglets I look as reasonable and as much myself as possible and that is the best we can do.  I am trying not to stress,although I certainly have my days.  But I feel taking medication for malaria, etc. can only add to the toxins or whatever that have already caused this. 

Comment by okalopecia on May 7, 2015 at 11:42am
Got it, thank you Sandy
Comment by SandyA on May 7, 2015 at 10:57am

Lo, I just emailed you a copy of Debs sheet. Hope you got it.

Comment by Lo on May 7, 2015 at 7:01am
Sandy, can you send it to me as well? Lobertella@yahoo.com
Many thanks!
Comment by SandyA on May 6, 2015 at 10:50pm

I recently received the info sheet from Debs so would be happy to forward it to you.

Comment by okalopecia on May 6, 2015 at 10:46pm

Debs could you please send me a copy of the FFA fact sheet, or if anyone that has a copy that would be willing to forward. Email: ddilldine@tds.net

Comment by Donna on May 6, 2015 at 4:16pm
Has anyone experienced withdrawal symptoms in stopping clobetasol? I have been on it for over two years and it did not control the inflamation. I am concerned to stay on it but in going to every 2nd day experience low level pain om scalp and feels worse than it ever was before using the clobetasol. On reading up on-line it sounds like withdrawal can be a real problem.
Comment by Will Be Healed on April 3, 2015 at 11:31am
MJ, my homeopathic doctor recommended the moducare and I spoke to my derm doctor about it since I will be taking plaquinal after I get my last eye exam today and they confirm it is ok for me to take together. The derm said it was fine to take both.
Comment by Ann Wilson on April 3, 2015 at 6:50am

That is very interesting and something I will try!! thank you for sharing, Will be healed, and thanks for telling us the length of treatment before you saw results!

 

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