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 Celia on September 25, 2014 at 6:02am

Yes Catherine - by train from London is easy.  I will send you directions.  Can you make any of the dates I suggested ?  If people let me know which dates are possible then hopefully we will find one date that suits most.  I will invite you as a friend on this site to give you info. Thanks, C

Comment by Norfolk Girl on September 25, 2014 at 5:36am
Hi C, sorry but can't make those dates. Hope you have a good day.
Comment by Catherine on September 25, 2014 at 5:17am

Hi C, Thank you so much for organizing! Is it possible to reach you by train from London? I don't drive unfortunately...

Thanks,

Catherine

Comment by Celia on September 25, 2014 at 4:37am

Hello ladies in the South East - I am trying to organise a get together as it's a while since we had one - I am suggesting the 15th,16th or 17th October if anyone is interested - close to Junction 2 M40 - please let me know if you can make any of these dates and I hope to see you !

Comment by Catherine on September 24, 2014 at 5:43pm

Hi Debs, Anne and everyone, I will try to get a transcript of the full article on the injections (as opposed to just the abstract). I am not subscribed to the medical journal that published the article, but I will see if my GP can download it for us. 

More soon...

Catherine 

Comment by Debs on September 21, 2014 at 1:49pm
Ladies using minoxidil please be careful if you have cats, it is toxic for them, i used throwaway latex gloves to apply topicals when i used them to ensure nothing was transferred to pets.

Good luck with your treatments.
Comment by MJ on September 20, 2014 at 9:45am
I am going to try to use it at night, but I think thAt means I will need to wash my hair every single morning. I only like to wash it every other day and sometimes less on the weekend. I was told to use it over top of the Rogaine. Of course I failed to ask how long I should wait before applying it. I am going to pick up the rx today and start tonight. I am excited about using it on my eyebrows. The Rogaine has definitely helped them along, but I would love to see them fill in a bit more.
Comment by Alice on September 20, 2014 at 8:01am

MJ, I've been using Eilidel cream on my brows for over a year and they have mostly grown back. I started using Rogaine on my scalp about 6 mos ago and my hair has never been thicker. I am seeing some new growth at the front hairline, so apparently not all of the follicles are scarred over. It seems to me that using Elidel cream on your scalp would be very messy. I quit using it on my brows in the morning because it made it hard to fill in the sparse areas with makeup. Rogaine might work without the Elidel. It has for me.

Comment by MJ on September 19, 2014 at 9:10pm
Hi ladies, I wanted to give an update to my follow up with my derm at the Cleveland Clinic today. I am still pretty stable from my last visit in May. Maybe a little loss, but not too much. My regiment has been changed. I am now going to use clobetasol solution only 3 x week. I will use rogaine followed by Elidel cream daily. Apparently, the combination of Elidel and Rogaine has been shown to grow hair in FFA patients. I am a little anxious about how the Elidel cream will work. I hope it will be easy to apply without making a mess of my hair. Anyone else using this application? Also, I signed up to participate in a survey project on FFA being conducted by Duke University. It is an online survey. I would encourage all those in the U.S. to ask their derm about participating. It will be a five year long study to follow patients and their progression. You have to do this through your doctor and sign a consent form.
MJ
Comment by Classical Anne in NC mountains on September 19, 2014 at 3:16pm

Catherine already provided the information on the study in direct quotations.  In hyperlink, it is as follows: http://www.ncbi.nlm.nih.gov/pubmed/24738979

Please do not be dissuaded from trying the injections!  I can't imagine what horror stories some may have heard, but I am speaking from 15 months actual experience!  Knowing how thin the skin on your forehead is in the first place, I can't imagine how deep anyone believes the 'dents' may be, but I assure you it's just not that visible to others.  And it is completely reversed with the use of Retin-A type ointments.  It is the least invasive medical therapy offered -- no chemical effect, no risk of reactions with any other drugs in your system.  It is entirely superficial -- and it works. 

 

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