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 Alice on September 12, 2013 at 7:09am

For those of you using Rogaine, what is the dosing? My derm said she reccommended staring out just 2 or 3 times week, but I failed to ask why. I'm wondering if starting slow makes a difference with shedding or irritation. I almost bought some at Costco yesterday but chickened out after reading the precautions on the box.

Comment by Sam on September 12, 2013 at 6:53am
I think the shots should just be done where you have hair so any indentions should not be visible. Of course if u lose that hair eventually it may be but mine were a centimeter back. I just did one so far but I can keep you posted.
Comment by Liz on September 12, 2013 at 4:35am

Hi Debs. I have indentations along the area where I have lost my hair which were not there before I had this condition but were not caused my the steroid injections either. Where I had the steroid injections there are no further indentations but in the last 2 weeks I've lost more hair in that area.
I'm feeling a bit crap today about this condition. Usually I'm ok but I'm now at the stage where wearing nothing is not an option. I don't mind wearing a scarf. I talked to Trendco about not wearing a wig cap and they advised that I should or my wig might not be secure :o( Anyway. Any links to websites selling scarfs would be cool :o) xx

Comment by Debs on September 12, 2013 at 3:08am

STEROID INJECTIONS... can anyone tell me please... if you had steroid injections and it left you with dents in your head how long did it take before the dents went away? or do you still have the dents and they stay forever??? This may be my next treatment option and I can't find anyone on any alopecia site that has used these injections and not ended up with dents in their foreheads....

Carol, thanks for the info. I will check out this supplement, sounds like it has a bit of everything we need in it.

Comment by Debs on September 11, 2013 at 12:21pm

Hi Ladies, have just got back from a fab holiday in France. So been away from the site for a week. Liz, yes... I also have the old fashioned fillings in my teeth. I had my molars filled as a child due to the side effects of me taking tetracycline antibiotics as a baby for pnemonia... funnily that is the same drug we are being given for our FFA (it only effects babies future teeth not us as adults)...

Very hot on holiday. Used a synthetic wig (with open wefts) Jon Renau brand and also a couple of nice silk scarves... I was very comfortable in both options and the heat was not a problem.

I saw an article in the Daily Mail about EYELASH TRANSPLANTS... It is an expensive option but one that might be worth having a go when your FFA has stabilised. The article says surgeon Asim Shahmalak at the Crown Clinic in Manchester performs this procedure. I assume there must be other doctors that do it too. The procedure was invented in the USA apparantly.

Plus... I saw a couple of ladies on holiday with FFA. I mentioned it to my friends and they agreed that the hair loss was like mine. This is the first time I have noticed other FFA sufferers and had a friend with me to confirm I am not just being paranoid. I really feel this is not a rare condition just under-diagnosed.

Comment by Annie on September 11, 2013 at 10:49am

Hi all, I've been using 5% Rogaine since early April. My shedding doubled from week 2 thru week 4, then I went back to my normal FFA shed. It's true that you won't grow hair on the scarred areas, but some of the fine baby hairs around my face has grown back, which helps to cover the bare spots. My hairdresser noticed new hairs sprouting about two weeks after I started using Rogaine. I now have new hairs ranging from about 1/2 - 2 inches all over my head. Regarding irritation, my scalp was itchy & tender for about a month when I first started using Rogaine, but I slowly adjusted to it.

Comment by Jules UK on September 11, 2013 at 4:37am
Hi Rita, I've been using Regaine 5% since beginning of July. I've since lost loads of hair. I had expected some hairloss preceding some new growth to thicken up what's left but there's no sign of that yet! I've heard from others that it can take around 6 months to see a difference so I am sticking with it in the hope that it will work. Otherwise, I've had no side effects. This sounds demoralising, I'm sorry, but that's my experience so far. It would be interesting to hear from anyone who's had success with Regaine, especially if hairloss was very noticeable but then things did improve. X
Comment by Sam on September 10, 2013 at 10:20pm
I had the shedding, so much so I stopped it. I only did it for about a month. It also made my ears red and irritated so my doc thought I may be allergic. I am hoping what shed will grow back. But I do hear it works and shedding should be sign its working as better hairs should grow.
Comment by Rita - Canada on September 10, 2013 at 9:36pm

I saw my derm today and she encouraged the use of Rogaine 5% but I recall reading that several people had more shedding for awhile upon starting. Is this what most have experienced? Derm said this happens because the hairs that are just sitting there ready to shed get pushed out by the newly grown hairs. I understand no growth can occur on the areas where FFA has demolished.

Comment by Polly UK on September 9, 2013 at 11:33pm
I am also allergic to nickel!
 

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