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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

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

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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Comment by Jules UK on September 8, 2013 at 4:32pm
Hi all, feeling very mixed up at the moment.... Just back from a great week in Cornwall. But after using Regaine for about 3 months and taking Plaquenil for 6 months, my hairloss has accelerated considerably. Do I carry on in the hope that something may kick in? Hubby has hinted that a wig may be closer on the horizon. I'm trying to just get on with things as normal but so churned up inside! I've invested in some lovely soft buffs and circular carves from Seasalt. Even on still days, just walking moves the hair to show bald bits and there's barely enough hair to cover my ears anymore. Just feeling disbelief! Sorry, needed to offload! Thanks for being here! Xxx
Comment by Rita - Canada on September 7, 2013 at 4:26pm

Sigga-Excellent advice, wish I had done that but Derms should have come up w/this: taking a photo of one's frontal hair areas before a treatment(which are usually 3-6mths) & one afterwards.

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!

 

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