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 Debs on February 18, 2013 at 5:34pm
Simone I want to stop my hair loss but my gut feeling is exactly what you have written, this condition doesn't seem to respond to treatment and the long term effect of taking drugs will have some negative impact on one's health. It is very hard to know what to do for the best.
Comment by Simone NJ USA on February 18, 2013 at 1:37pm
Welcome to you, Kath...
Comment by Simone NJ USA on February 18, 2013 at 1:36pm
Hi Liz:

I, too share your views. I was given a prescription of Plaquenil & haven't used it as yet. I have done many researches regarding all these kinds of anti inflammatory drugs into the body and over the course of time it leaves the body very vulnerable to thing like cancer an other infections. I'm not currently taken anything right now and still debating whether to just let this thing run its course since it seems to stabilize on its own and really the course of this disorder seems to be inevitable...thoughts anyone?
Comment by Kath UK on February 18, 2013 at 12:52pm

Hi everyone. I'm new to the group and have been following this discussion with interest. I'm seeing a dermatologist in a couple of weeks after a gap of two years during which I've been using Dermovate. Last time I saw a consultant dermatologist he suggested I take a course of Cyclosporin but when I read about possible side effects I decided against it. I wonder if this new dermatologist might suggest I might take plaquenil?

Comment by Kath UK on February 18, 2013 at 12:45pm

Comment by Liz on February 18, 2013 at 11:45am

Hi Simone. I was prescribed Doxycycline and Steriods. The Doxycycline was the alternative to the plaquenil. The steriods were prescribed for 8 weeks for a boost. However I have now decided that I am not going to take anything further until I have spoken to another doctor. I was a nurse for many years and I always err on the side of caution when it comes to medication. When it comes to my eyes I prefer to take the advice of the eye hospital and not of a dermatologist.
x

Comment by Simone NJ USA on February 18, 2013 at 11:26am
Hi everyone:
Liz, can you telle what meds you are taking now?
Comment by PamW San Diego, CA, USA on February 18, 2013 at 10:12am
Rebecca, the reason why you have an eye exam is so they can get a baseline to use as a basis for comparison. My eye doctor said problems are very rare and are reversible should anything go wrong. I believe they are looking at your retinas, and not vision issues. So, if you had an exam recently and they have the records, it is probably ok to use that exam as your basis for comparison. Plaquenil can take 3 to 6 months before it begins to work.
Comment by Liz on February 18, 2013 at 9:56am

Hi Rebecca. I was prescribed Plaquenil and I wont take it. The eye hospital said that they would keep an eye on my eyesight if i do choose to take it but I am very short sighted and to be honest I would rather be bald than have any further eye problems. I have been told by my optician that any problems are not reversible and that the drug can interfere with colour vision which is another thing I would rather not risk.
x

Comment by Susanne on February 18, 2013 at 8:11am

Rebecca - I know this can all be so overwhelming. I struggled with the decision as well. I did not have an eye exam before starting it, but was told to be sure to have my eyes checked every six months from here on out. I did have a liver function test before starting and my derm took one again when I had been on it two months. It is interesting to see what different doctors recommend. My doctor did say that it is quite safe for the most part. Almost all drugs have some sort of side effect, but as far as plaquenil goes, the extreme side effects are very rare, from what I understand.

 

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