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 christiekd on July 26, 2013 at 9:41am

I wanted to update you all. For those of you who don't know. I was diagnosed with FFA 2 1/2 years ago, but I really have had it for 4 years looking back on when my hair loss started and all the misdiagnoses until it was confirmed FFA. I did really well when I first started treatment for a year or so, then last year I had some stressful things happen in my life and had a relapse with lots of inflammation, itching and hair loss. It has taken a year to put things back to right but I think I did it.

I had my 3 month appt with my derm yesterday and things went well! I have felt really good in the past month or so. Right now I don't have any more burning and itching and my hair loss has stopped. My doctor didn't see any inflammation and told me not to change anything I am doing, and he would see me in 6 months. He was very happy with where I am at right now. So, I wanted to let everyone know exactly what I am doing.

Clobetesol - use it 2x per day for 2 weeks, then decrease to weekends only for 5 weeks, then repeat cycle.

protopic - apply 2x daily during the week when not using clobetesol

rogaine - mens strength. use 2x per day to hairline and eyebrows.

rapidlash - 1x at night to eyebrows

tretinoin (retin A)- apply to hairline and eyebrows

minocycline - (instead of doxycyline) used for 8 months, just tapered off and am no longer taking any antibiotics. will keep it on the back burner in case things go south again.

tumeric - 2x per day.

plaquenil - 2x per day.

My eyebrows have come back a bit, however, my left one is a little more sparse than my right. And both need daily enhancement. I am using a great product that I just found and even my derm could not tell that I had used makeup on them. It is called Smart Brow. It really works to thicken up the hair you have left to make a complete brow. I got it online at Dermstore.com.

As you can see, my daily regimine is tough. But I do it faithfully along with lots of exercise and positive thinking. And hopefully, I will stay this way for a long time. My derm calls me his "model patient" because twice I have been able to halt the hair loss progression (at least for a while). We will see how long this lasts. Especially since we are not certain what causes things to flare up again.

I hope this helps.

Christie

Comment by Debs on July 26, 2013 at 6:59am

WIGS - www.wigsupport.com - this site is by women with hairloss that wear wigs. They post photos of their wigs and give advise on everything wig related.

Synthetic wigs look natural and are easier to maintain than human hair wigs. A 'cheap' wig would be something less than 100 dollars or 80 british pounds. You can get very cheap wigs that will not be comfortable/last long. A nice synthetic wig by a brand like: JON RENAU, RAQUEL WELCH, REVLON, AMORE, GABOR, HENRY MARGU, ELLEN WILLE will cost between £125 - £250 this will look natural, be comfortable and should last approx 4-6 months. try wigs on in a wig shop and then buy online because it is cheaper. In the UK we get the VAT deducted as we are medical users.

UK website I use is www.buywigs.co.uk

My recommendation is check out synthetic wigs with lacefronts (this makes your hairline look natural) in the brands I have listed above.

You dont need to cut your own hair, just pin it up underneath your wig. Wash wigs in cold water with wig shampoo and wig conditioner. Synthetics regain their style as they dry you don't need to style them.

Comment by Brenda, IL US on July 25, 2013 at 11:13pm

Thanks for thinking of me Carol. It had to have helped because i've been happy all day! The weather is beautiful too. I looked at some wig sites that were mentioned on here. Think i will find a shop when i'm in St Louis tuesday to get some advice. This site is absolutely wonderful. Almost back to my old self (minus lots of hair). Haha

Comment by Brenda, IL US on July 25, 2013 at 2:15pm

I'm not quite ready for a wig either. I think i"ll try the headbands. I want to get brows tattooed. Can you do that if you're getting injections?

Comment by KarenGinny - Iowa, US on July 25, 2013 at 2:06pm

Brenda, I also wanted to say that don't worry about talking about yourself too much, that's the best way to share your story and let us all understand what you're going through - what we're all going through. Sometimes writing it all out is a good way to deal with it. My husband is very understanding but still he doesn't know what it's like to be a woman with hair loss. Other people act like it's "only hair" and not even noticeable, but to us it is. We are the ones who have to deal with it every day and try to make ourselves presentable to the outside world so we don't get stared at or presumed to have a deadly illness. I have been wearing stretchy cotton headbands to hide my bald areas at the temples and forehead. I wear them under my hair and bring my bangs down over them and it helps when I go outside and the wind wants to blow my hair all over. I'm not sure if it looks right or not but it's the best I can do. Or I have a cotton baseball style cap I wear to my son's baseball games or out walking. I've never really been a hat person, but now I have to be. Indoors I just wear my long bangs down to cover my forehead as well as I can but they are thin, and my head is probably still visable. I'm not ready for a wig at this point yet, since the back of my hair is still fairly thick. What does everyone else do to hide their hair loss??

Comment by Brenda, IL US on July 25, 2013 at 1:07pm

Thanks so much for the kind words. So happy i found all of you!! I already feel so much better!! Much thanks to Celia!! I found a good wide brimmed hat in the garden dept at WalMart thats made of recycled paper and polyester that has a drawcord under the chin. Lightweight and not as hot as others ive worn.

Comment by Brenda, IL US on July 25, 2013 at 11:46am

I may have been using too much Clobetasol. Will try it again. Depression and anxiety is something i've been dealing with for two years. My lupus doctor put me on the generic for Effexor. Then added 150 mg of Bupropion. Helps a lot for the depression but not the anxiety. My company made me go on long term disability exactly two years ago today. I patrolled power lines on an ATV and read electric and gas meters. I could only do half of the work at the end. The lupus kicked my butt. I went from walking all day almost every day to sitting on the couch crying and feeling sorry for myself. Gained over 20 pounds not being active and taking prednisone. Meds helped me get off the couch but hard to get rid of the weight. Im taking omeprazole for GERD so that might be why im not having stomach issues. Sorry im writing so much about myself. My boyfriend's never let me talk about it. He believes if you talk about problems it makes you worse. Will go to NAAFs website. Thanks

Comment by Pam on July 25, 2013 at 11:35am

I have not worn a hairpiece or wig yet, but feel that I am now at the stage that I need to, as my hairline has receded so much that I am feeling extremely aware of it all the time, and it is adversely affecting my life (especially on windy days!). An old friend who hadn`t seen me for a couple of years asked me very concernedly what was the matter with my hair and whether I was having cancer treatment...so that is evidence that other people are noticing it!

I would really appreciate some feedback from people who are now using hair systems, wigs, or hair pieces.

I have looked at intralace systems online (Lucinda Ellery) which sound amazing on their website (of course!), but then I have also seen that some users have commented on the fact that they can destroy your own hair by the way they are attached, apart from being incredibly expensive.

Are synthetic wigs easier to maintain as real hair, and just as good?

People talk about "Cheap" wigs, and quality wigs - how does one tell the difference?

Are top pieces, 3/4 wigs, clip on hair pieces easy to use? My hair is OK at the back, but vanishing at the sides and front hairline.

I have seen places advertising free consultations etc, but I don`t want to get taken in, and go along the wrong path. Help!
I am feeling rather lost trying to investigate all the options, and would so like some advice here!

Comment by Annie on July 25, 2013 at 10:44am

Brenda, I used 5% Clobetasol lotion for a little over two months. My doctor said that my scalp might be tender for a few days until I got used to it, but the itching & burning never stopped. The worst part was that I was never able to forget about FFA with my itchy, sore scalp. (My husband remarked that I reminded him of a monkey always scratching my head.) My doctor seemed surprised, but said I could stop using it for a few weeks, then try using it every other day. He also said I might be using too much. It only takes a tiny bit.

Comment by Brenda, IL US on July 25, 2013 at 10:23am

Hi Debs. Thanks for the welcome. I see my dermatologist Tuesday because the Clobetasol seems to be causing more inflammation and itching than what i started with. Has anyone had this problem? I have some Desonate gel for eczema that i put on my scalp that is helping now.

 

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