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: 600
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 Jules UK on July 19, 2013 at 11:24am
Just a thought, but might it be an idea for each of us to try drawing up a personal timeline, with illnesses, medications taken and stressful events alongside onset of and flare-ups of FFA, to see if there may be any correlation?
The only drug, before FFA, that I took for any length of time was for a toenail infection. Just checked and a possible (rare) side effect is -you guessed it, hairloss! I'm going to give the timeline a try.
Xx
Comment by Debs on July 19, 2013 at 10:33am
Thanks Jules, I am using an organic shampoo and have stopped using hair dye since July 2012, a dermatologist at my local hospital asked me to stop processing my hair, my scalp never itches or gives me any irritation. I think it is a good idea to treat our scalps very gently. Xxx
Comment by Jules UK on July 19, 2013 at 9:36am
I thought this information was interesting, about ingredients to avoid in cosmetics/shampoos etc. hope the links work. I'm using an iPad and am not too good with "fancy" stuff like copy and paste on it!

//www.rebootwithjoe.com/9-skin-care-ingredients-to-avoid/#

http://www.soilassociation.org/whatisorganic/organicbeauty/uncertif...

Xx
Comment by Liz on July 19, 2013 at 9:34am

When I started to lose my hair I researched Lanzoprazole to see if it might cause hairloss and I read that it can cause thining of the hair in some people. I searched some forums and there were people who were experiancing thinning hair since taking the drug. I'm not sure either way if it's caused my FFA however I have male pattern type thinning too and the medication may well have contributed to this x

Comment by LTown on July 19, 2013 at 9:19am

.Hello Liz,I have been taking protonix for 18 years. I stared losing hair 8 years ago. I have tried to come off of it but it is so hard to. I have was off for several months until the end of 2012, then I came down with the shingles in January and decided to go back on it until I got over them. My hair started falling out again. oh my!

Comment by Liz on July 19, 2013 at 8:43am

Hi LTown. I have been taking Lanzoprazole, a similar drug to yours, for the past 10 years x

Comment by LTown on July 19, 2013 at 8:21am

I have FFA. I have been taking protonix (acid inhibitor)for a very long time. It is the only med I have ever taken for a very long time. I was wondering if this could have had some affect on this problem. Does anyone else take this med. or another form of it?
Thankful for this group

Comment by Debs on July 19, 2013 at 4:52am
Terry, all alopecians are autoimmune conditiòns. Our Immine systems have basically gone into overdrive and our bodies are attacking our healthy cells... This is true for other autoimmune conditions like lupus. Many autoimmune conditions are life threatening and disabling. I would argue that alopecia is life changing and should be treated with gravity by the medical community.

That is a very good idea to see an expert in immunity. I have not heard of anyone going that route.
Comment by Alice on July 18, 2013 at 6:22pm

Kay, the whole inflammation/hair loss thing is confusing. I think that most of us have noticeably inflamed hair follicles (red bumps) along the frontal hairline, but have also lost hair without any noticeable inflammation along the sides. From what I can tell, no one has been able to regrow hair w/ Rogaine in areas of hair loss. Some of us have the itching/tenderness where there isn't any noticeable inflammation or hair loss, like the crown of the head. None of it makes much sense to me.

Comment by Jules UK on July 18, 2013 at 6:46am
That's no problem, Debs. I understand completely! You would have been perfect, but I'll do my best. After my appt with Dr Harries next week, I'll know better what he wants from us and will ask for suggestions. Watch this space....
Jules xx
 

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