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 Marilyn on December 10, 2014 at 10:16am

Thanks for all the great feedback-I have a bit of infection under upper and lower lids of eyes-have drops now for 3 weeks-Dr. said it wasn't allergy related and he didn't believe any connection to FAA-not sure how much he knows about FAA but with drops, warm compresses and tears for dryness-he said all should resolve.  I already feel a bit less burn and itch after 3 application of eye drops -tobradex.  I have thought about eyebrow tattoos but haven't found a great artist here where I live.  Someone posted, a woman in Boston-wow, those brows looked great.  Any one from Mich. let me know if you have found a great tattoo artist for brows.   Chris C I  need to get info. on Carf meetings or group in Chicago-at least you are closer.  It's only a 30 -40 min. plane ride and I believe 3 1/2 hr. drive-depending on traffic!!  Again, thanks for the responses-I don't feel so alone in this process that most say "won't kill me"-and yes indeed I know this and am grateful but......you all understand.

Comment by Sas Holland on December 10, 2014 at 8:51am

now that you mention it, I was diagnosed with dry eyes also about the same time my eyebrows were falling out. I had to stop wearing contact lenses then and I wear glasses ever since. I don't have to use eye drops, because I only had trouble with it when wearing contact lenses.

Comment by Anne Louise on December 10, 2014 at 8:46am
I was diagnosed with dry eye during the time my eyebrows were falling out. I've always wondered if there was any correlation. Now I use eye drops, especially in the morning, in addition to all my other regimens!
Comment by ChrisC. Chicago, IL on December 10, 2014 at 7:18am

Hi Marilyn, welcome to the group! I wanted to comment on the itchy eyes, since that has been a symptom that has just started for me as well—some days worse than others. I was diagnosed in 2011 and I am sure I had it for a few years before that. I had never had discomfort—the itching/burning scalp thing until this summer. My doc, who lead the CARF conference here in Chicago, increased my Plaquenil dose to 400mg twice a day! The burning has really subsided although there is still loss.

I've been wondering if the dry eye was due to the increased Plaquenil dosage, or allergies, or not drinking enough water, or the dry winter air. . .  anyway I will be going to an ophthamologist after January 1. I would be interested to hear any follow up on this.

Thanks for sharing.

Comment by Sas Holland on December 10, 2014 at 6:30am

I totally agree with C about the eyebrow tattooing. I had mine done again (4th time in 10 years,  since I don't have any eyebrow hair left) 10 days ago and i am so happy with them. I just uploaded a picture of them in my photo album.

Comment by Celia on December 10, 2014 at 3:42am

Hello Marilyn - welcome !  May I suggest eyebrow tattooing - if you get a good person - the results are a great confidence boost and one less thing to mess around with when getting ready to meet your public !!!!

Comment by Marilyn on December 9, 2014 at 10:51am

Thanks Anne-haven't changed any products but I'll be looking for answers from ophthalmologist today!!  Aside from oral meds. for the FAA-not using anything topical-tried many things that didn't appear to work-a frustrating process for sure-already shed many tears but still grateful it isn't worse-although I will admit not looking forward to a wig but darn I'm great on eyebrow application-got to keep a sense of humor-thanks all-really I so happy to have found you all.  

Comment by Classical Anne in NC mountains on December 9, 2014 at 10:08am

I should also say anything you might be using on your eyebrows or eyelashes.

Comment by Classical Anne in NC mountains on December 9, 2014 at 10:07am

Marilyn, my first thought is that it may be an allergic reaction to some product you are using on your hair, whether prescription ointment or over the counter shampoo or styling product.  Welcome to this friendly site!  Hope you find an easy answer to the burning in your eyes.

Comment by Marilyn on December 9, 2014 at 9:12am

Hi everyone-I am new to this group but I have a question-has anyone experienced itchy burning eyes with FAA-I was diagnosed in 2010 probably had it since 2008-in the last 3-4 months have had symptoms flare with additional hair loss but the last 2-3 weeks have had eyes that burn-going to dr. today but just wondering if anyone has heard of connection with this kind of alopecia.  Thanks so much!

 

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