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 MJ on April 3, 2015 at 6:32am
I just looked up moducare. I am very interested. I wonder if this can be taken along with paquinal? Did a doctor recommend this to you?
Comment by Will Be Healed on April 2, 2015 at 11:25pm
I wanted to share some positive news on hair growth in my eye brows and lashes. I have been using natural castor oil on my brows every night and using natural olive oil on my eye lashes. The lashes that I lost grew back in about 6 months and my brows grew back (they were thinning pretty bad) in about 9 months. The brows are not as full as they once were, but now when I use the brow powder it doesn't look funny due to the patchiness. Thought I would share just in case others who haven't tris this want to try something natural with positive results. I also take moducare, so that may have something to do with it as well, but the Moducare alone didn't help with the lashes and brows.
Comment by NatalieW on March 28, 2015 at 1:52am

Thanks Maddy for your information. I an hesitant to change it when it has dealt with some of the irritation and isn't causing me any major side effects. I will discuss it more when I see him next

Comment by Maddy, California, U.S. on March 27, 2015 at 11:17pm

Oh, and I do take a probiotic daily too.

Comment by Maddy, California, U.S. on March 27, 2015 at 11:17pm

Hi Natalie, I have been on Doxycycline (1 low dose pill per day) for a couple of years now, and I understand your dilemma. I seem to have had good luck on the Doxy, along with Rogaine (Regaine), 1 Turmeric daily and now I have added Moducare. My FFA does not seem active now, nor has it for almost 2 years....so, I don't know what to think, but this "program" seems to be working for me right now, so I do not want to change it. I do not seem to have any side effects from any of it, except I am definitely more sensitive to direct sun. So, for now, I think I will stick with it. My doctor didn't seem to be concerned about me staying on the one low dose Doxy per day. I wish you the best with all of this...it is an incredibly frustrating and baffling condition!

Comment by NatalieW on March 27, 2015 at 10:08pm

Oh Sally - isn't it frustrating? I have found Regaine to be quite helpful but it also does irritate my skin so the Doxycycline and topical help to control that I think. I am concerned that if I stop the Doxycycline for 3 months - I won't see the impact of stopping it until it is too late.

Comment by sallylwess on March 27, 2015 at 9:45pm

NatalieW, I think you should get the opinion of another doctor before you decide for sure.  I have stopped taking all topical at this time because I have allergic reactions to them.  I am thinking of taking plaquenil because I have used every other thing, except Avodart, available to try and stop the progression FFA.  I have lost a great deal of hair recently and it is attacking the crown of my head now.  I stopped using Rogaine because of redness and flaking, but want to give it another try.  

Comment by NatalieW on March 26, 2015 at 5:25am

My Derm wants me to stop taking Doxycycline in 2 months when I next see him. His opinion is "why take something you may not need to". But I feel that it manages my redness/irritation on the front of my scalp, and I may not be able to tolerate using Regaine (which is growing some little hairs at the front of my hair line!!) with the Doxycycline. Any thoughts on this? My FFA is quite slow moving so far but certainly still active. I have lost 1/2 inch at the front of my hairline in 1 year but my eyebrows have regrown with Regaine.

Comment by Brooke on March 4, 2015 at 2:08pm

Sallywess: Your story touched me too.   I also lost a daughter many years ago and can identify with what you may have experienced.  Fortunately, I too have other children (all boys) and they have kept me going.  Now I also have granddaughters and sometimes see fleeting reminders of my daughter.  Bless you.

Comment by sallylwess on March 4, 2015 at 1:39pm

Kat, that is very interesting!

 

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