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 Rita - Canada on July 13, 2013 at 8:46am

Hello Terry,re the Vit.D low levels.I too, had same & both MD & Naturpath said most people who live in our climates have such.I take 5 vit.D.Drops (5,000 IU) & have brought level up.Re sweating-I've had upper body incl.head ever since peri-menopause(15 yrs.+, could be from menopause or from a med one is taking but not aware symptom of FFA. Re tattoed eyebrows-could do that, eyelashes-a bit nervous but the results as Deb has experienced would be welcomed.

Comment by silversurfer on July 12, 2013 at 5:21pm

just had my eyebrows tattooed. Am taking bad seeing eyebrows lol

Comment by Jules UK on July 12, 2013 at 3:57pm
Hi Debs, by anti- inflammatory do you mean you're going gluten free or paleo? X
Comment by Debs on July 12, 2013 at 3:32pm

I had a consultation today with Dr Harries. I have been taking the hydroxychloroquine sulphate for 4 months (2 a day). The sides of my hair and temples have not lost any hair but my front hairline has. I am going to take the drug until November (so for another 4 months) and then go back to see if the hair loss has slowed down. I know this drug takes a few months to get into our systems and I don't get any side effects so I will carry on till November and see how it goes. I also continue to use my turmeric supplements. I am going to start changing my diet and adopting the anti-inflammatory diet approach to try and give myself every possible chance of sorting this out. I do feel positive that whatever happens I have done my best, as we all have, to get this FFA under control. Have a fab weekend. XXXX

Comment by Jules UK on July 12, 2013 at 4:42am
No weight gain, but I swear by the 5:2 fasting diet. Very hard on the fasting days but great on the days off! X
Comment by Celia on July 12, 2013 at 4:27am

Has anyone noted any weight gain associated with Plaquenil - I have gained 4 kilos since starting this - not good ! Still losing hair !

Comment by Debs on July 12, 2013 at 2:46am

Hi Annie & Rebecca, many thanks for that info. Glad the minoxidil is helping to thicken up your remaining hair and eyebrows. XXXX

Comment by Annie on July 11, 2013 at 5:11pm

Perhaps I should clarify my earlier post regarding Minoxidil. I should have said that it has worked great for the areas that haven't been affected by the FFA. Unfortunately, those spots are still bare. I have been able to regrow a lot of the short baby hairs around my face, which helps to cover up the bare spots. I use it on my entire scalp to thicken up the existing hair as well as on my eyebrows, which haven't been affected yet. As an added bonus, my eyelashes have gotten longer & thicker. Maybe the FFA will take longer to advance if there's more hair follicles to attack. One can always hope....

Comment by Debs on July 11, 2013 at 2:44pm

MINOXIDIL (also called rogaine and regaine) Hi Ladies, this is very interesting that the minoxidil is working for you. The first person that diagnosed FFA for me was a trichologist at the Belgravia Hair Loss Clinic in London. This was after my GP had told me I had alopecia but did not know what type! She told me to go back to my GP and ask for a scalp biopsy to get the FFA confirmed. I was supposed to go back to the trichologist and she was going to put me on a strong formulation of minoxidil but I did not go back and have been seeing dermatologists ever since.

How many of your ladies have used minoxidli ? Has it worked for you all?

Comment by Annie on July 11, 2013 at 10:57am

Terry, I have had good luck with the men's 5% Minoxidil foam. I have been using for 3 months at the recommendation of my doctor. I have regrown a lot of the fringe around my face and have new hairs about an inch long all over my scalp. I did have an initial shedding from week 2 through week 6 after I started using it. This is normal, and a good sign that new hairs are growing in and pushing the old hairs out. It's not easy seeing all those lost hairs on your bathroom counter when the last thing you want to do is lose more hair, but I honestly think that that Minidoxil is the only thing I've used since my diagnosis 4 months ago that makes me feel like I'm actually seeing some positive results.

 

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