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: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 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

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Comment by MJ on January 29, 2015 at 6:12am
I believe I noticed the best growth in my eyebrows when I started the elidel along with the rogaine foam. I have to say though that since I switched protocal from rogaine and clobetasol daily to rogaine and elidel daily, cutting back to 3x weekly on clobetasol, i think i have thinned more. I am leary of continuing the elidel on my head through The beginning of March until my next appt. by the way, I find the Rogaine foam much easier to apply than the liquid.
MJ
Comment by Classical Anne in NC mountains on January 28, 2015 at 8:25pm

I've had success in my eyebrows with Rogaine 5% each morning, and Elidel cream each night.  I apply both with a Q-tip, no fuss, no cleanup.  To answer Jen's question, I have been told by many sources that you DO lose hair a few weeks after starting the Rogaine, but then it fills in nicely.  Of course this is ONLY in the areas that have not been affected by FFA.  Sadly, there is no hope of regeneration when the follicles scar over.

Comment by NatalieW on January 28, 2015 at 8:24pm
Thanks MJ and Alice. That is helpful. I am using the foam twice a day. Have definitely noticed a difference on my eyebrows for which I am very grateful. They were disappearing very fast and look almost normal now. But just trying to work out his much of my head I should put it on
Comment by Alice on January 28, 2015 at 8:11pm

I use generic Rogaine all over my head, or at least as much as I can cover with one dropperful of the liquid. It has made my hair much thicker and easier to style to cover up the hairloss. It actually worked do well that my hairdresser started using it, too. I started with 2% twicecp a day, then switched to 5% once a day. 

Comment by MJ on January 28, 2015 at 7:34pm
NatalieW,
I only use it in the hairline and eyebrows. I cannot really say if it is working or not. The idea is that it strenghens the follicle to combat the follicle attack. I dont think I have had any new growth....maybe it just helps slow the rate of loss. I wouldnt unnessarily use it on the whole head.
Comment by Jen on January 28, 2015 at 7:30pm

Has anyone experienced more hair loss before hair gain when using Rogaine?

Comment by NatalieW on January 28, 2015 at 7:23pm

Just wondering - of those using Regaine and seeing an effect - how many are using it on their whole head, or just around the area of hair loss. Funnily enough, my Derm said to only put it around my hair loss "as you don't want overgrowth"!! ha - as if any of us could ever worry about having TOO much hair. Had to laugh.

Comment by Sas Holland on January 28, 2015 at 9:42am

ok thanx Jen,  I will have a look at the site you mentioned!

Comment by Jen on January 27, 2015 at 11:17am

If you join "her alopecia.com" and look for a poster named "hairscared", there is a demonstration under tricks for topper clips. She is a brave beautiful woman who wears hair beautifully and posts pictures. She wrote the tip that I posted.  Hair  on a thread looked somewhat like an apron.  The apron waist band would represent the thread and the front of the apron would be the area where the long hair is attached.  You would place the hair at the nape of your neck at the back under your own hair, bring the thread to the top front of your head and tie it there. Then you can attach bangs to the thread instead of your own hair.  I hope that I have not made you more confused. I suppose that you could just tie a strong string around your hairline area and attach your bangs to the string. It may be worth a try for those who do not want to clip onto existing hair.

Jen.

Comment by Sas Holland on January 27, 2015 at 9:01am

LOL, Alice!

 

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