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 Sigga on September 7, 2013 at 11:54am

Hallo I have not being here for a long time, but I have but some photos of my hair loss...

Comment by Rita - Canada on September 7, 2013 at 10:13am

I was given Clobetasol liq.to apply to scalp & derm merely said put some on & rub it in.I decided to only put along the thinning area sparingly. Next appt,she said there was atrophy of the skin & I can't bring myself to use it more than once in awhile & don't believe it does anything but thin the skin. She also gave me Doxycycline 100mg x 1 per day and even though it's against my better judgement of using this drug, have followed her advise by using it for 3 mths now. How on earth does one really tell if hairloss has slowed down.What measure is there to tell the derm if anything has helped other than we/ourselves. We see the thinned & balding areas & know there is still shedding but as to what degree????

Comment by Kath UK on September 7, 2013 at 5:38am

Thanks, Celia - you're a honey. Got your message OK.
Well, the sun's come out again here so I'm going to finish a painting then I'm off to the shoe shop.
KarenGinny - I had no problems with hydroxy. but I was advised to always take it with food. Good luck with it and I hope you are one of the 50% it works for.
Kath xx

Comment by Polly UK on September 7, 2013 at 4:05am
Thanks Linda x
Comment by April on September 6, 2013 at 8:29pm
Chrisy, my derm said he didn't want to put me on oral medication if I was not done having children because of side effects. However, I would think your OB has much more experience so I'm sure you can trust her opinion. I am going to talk to my OB about it at my appt. this month. My doctor is honestly not very helpful with any of this and I'm thinking of switching. It sounds like some of you ladies are seeing some great doctors. Chrisy, definitely keep us posted on how the Plaquenil is working for you. Maybe I will try it, since I just hate feeling like I'm not at least trying. Thanks!!
Comment by Polly UK on September 6, 2013 at 8:26pm
I had a thorough eye test a month ago before starting Hydroxy. They had a machine which took pictures of the backs of my eyes which were fine and they said it was ok to go ahead with it. I have a question.... my derm said I can now start taking 2 tablets a day as I am obviously tolerating it so I assumed he meant one tablet in the morning and the other in the evening but now I'm wondering if I take them at the same time? What do others on here do?
Off to Scotland for a week from Monday and will need a case just for all the extra pills and potions plus hats and scarves!
Comment by KarenGinny - Iowa, US on September 6, 2013 at 6:08pm

Celia, I haven't had it done yet, he told me to schedule a visit with the eye dr within the next month. I can post about it when it's done. Pam - I understand your comments about being less active. I feel like I can't go outside anymore unless I have a hat to wear or a headband to wear to hide my bald spots. I hate the wind blowing my hair around and it's hard to enjoy taking a walk or swimming when I'm constantly worried about my hair. I stopped going to an exercise class a year ago because I didn't want my hair exposed to the whole group. I wear my hair with long bangs in the front but there's still not enough hairspray in the world that will help on a windy day. At least in fall & winter I can wear hats more easily without getting so hot. If I wear a hat in summer I just sweat and my hair underneath is a frizzy mess when I take it off! We did buy a treadmill so I do use that at home. I haven't looked into wigs or hairpieces yet.

Comment by Pam on September 6, 2013 at 5:31pm

Sorry to hear Kath you have been feeling low - we all do at times I think. I have been feeling very depressed recently, as I realise that FFA has become a truly life-changing condition for me. I am an outdoors person who loves walking, cycling, swimming, horse riding, skiing and surfing, and all of these activities are difficult with wig wearing! I hate the look of myself with thinning hair and no eyebrows or lashes, and find it hard to be positive about a future of wigs and hairpieces. I am going to see a guy this week who has been recommended to me who fits hairpieces and wigs. Although I have just bought one, I am still feeling so unsure about the whole thing, and lack the confidence to wear it out and about. I am scared it looks too noticeablely like a wig, and that it feels hot, and may dislodge. I also want advice about how to cope with wearing hats and helmets with wigs if I want to keep up my riding and cycling. The horror of My Hair has begun to dominate my entire life!

Comment by Celia on September 6, 2013 at 5:26pm

Karen, what was your eye check like ?

Comment by KarenGinny - Iowa, US on September 6, 2013 at 5:18pm

Linda, Yes I'm having my eyes checked and he will do blood work too. I'm 48 and pre-menopausal so pregnancy is not an issue. I'm also on meds for thyroid and blood pressure but he said would be okay to take them together. So after being on it for a year, have you noticed it helping with the hair loss or inflammation? It seems like with most people it's hard to tell if the meds are working since it seems like the hair will fall out anyway, and burn out when it wants to. But maybe if I had been on this earlier then my hair wouldn't look so bad now.

 

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