Frontal Fibrosing Alopecia

Information

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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Judy on November 18, 2012 at 10:06pm

No, it really doesn't itch, only occasionally. I guess I am lucky. Thanks for the tip on Good Person. Are you happy with them (tatoos)?
Yesterday I bought a chubby eyebrow pencil from Clinque - I think I can learn to do it but what a PAIN!! (especially when I go out, forgetting that I didn't put it on!!!!)

Comment by PamW San Diego, CA, USA on November 18, 2012 at 9:58pm
judy, I went to. Good person for eyebrows. She is in Poway.
Comment by PamW San Diego, CA, USA on November 18, 2012 at 9:56pm
It is good that the redness is gone. Does your head itch or burn like mine?
Comment by Judy on November 18, 2012 at 8:50pm

Interesting about the clobestasol - I also think my hair is thinning on the scalp but maybe it's an illusion? .... Because the redness is gone now. My dermatologist said to takke the 2 pills together - 400 mg total/day. I questioned that also but she stuck to the 2 together.

Comment by PamW San Diego, CA, USA on November 17, 2012 at 12:29pm
Yes, 200 mg twice a day. I can't imagine taking both pilss together. I am also still taking the Doxy, which I think is actually helping with my rosey cheeks. Clobestasol on the red scalp, but I think it is thinning my hairline.
Comment by ChrisC. Chicago, IL on November 17, 2012 at 12:26pm

The Protopic is alittle sticky as the base is like vaseline. But I only put it at my hairline where the redness exists around the follicles. I am looking into a compounded prescription with the tacrolimus in a Cetaphil lotion base. My derm wrote a script for it but I have yet to get a cost. Will let you know. . .

Comment by ChrisC. Chicago, IL on November 17, 2012 at 12:24pm

I am only taking 200 mg of Plaquinil once per day. Are you both taking a total of 400 mg per day?

Comment by PamW San Diego, CA, USA on November 17, 2012 at 12:18pm
Judy, why are you taking the two pills together? One in the morning, and one at night with food makes it easy for me.
Comment by Judy on November 17, 2012 at 10:26am

Chris, I also wear bangs, glad that is working for you. Because of that I probably did'nt notice the hairline. I started wearing them VERY long to cover the eyebrows - I am terrible at applying pencil - Now that I know what this is, I will look into the tatooing and finding someone who can do the individual lines so it looks more natural. In the meantime I have been using Clinique's eyebrow powder when the bangs get cut too short.

Comment by Judy on November 17, 2012 at 10:17am

My dermatologist told me to use the Clobestasol solution once/day or every other day. The scalp where I apply it immediately cleared up but now I can see how terrible\y thin that area is. Pam, my dermatologist is in Hillcrest and she has one another patient with this. She also said this usually affects women with diaabetes or postmenopauseal. She was suprised when I said I went thru that 30 years ago when I was 40.
Right now I am in Palm Desert and will try to find someone who "specializes" in FAA - Pam, I will interested to know what you think of your dr at UCSD>
Chris, I can't believe the comment your dr made-really professional. I guess they just don't know anything about this.
I think my dermatologist said 2 months also to see if it is working. She took lots of photos. The nausea is really bad and I am taking the 2 pills at night w/food. It comes and goes, and gets better if I keep something in my stomach every hour or so-like applesauce, rice, 7up, etc So much for the diet.
Two years ago, when the eyebrows started, I began taking Thyroid pills and biotin (vitamin) plus using biotin shampoo. Obviously
those things did not work.
Your comments are appreciated. Pam, my email is Jkeller39@aol.com

 

Members (602)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service