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Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies 0 Likes
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
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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
Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies 4 Likes
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
Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply 0 Likes
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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Hi Annie
A lot of the hair on my head has changed. My hairdresser tells me that my hair is growing through in the same way as someone who has had chemotherapy. It's fine and whispy. The bits around the fringe area look like they've got electricity running through them. The rest has gone wavy and is also lighter in colour. The hair on my arms has mostly disappeared and the odd hair that's left is short and grows in a zig-zag fashion. I don't use any products on my scalp xx
Brenda, thanks for letting me know I'm not alone. I know what you mean about not knowing whether to laugh or cry. I always thought my hair was my best feature, and now I don't even recognize it. I sometimes think life will be easier if/when the time comes for a wig -- no more bad hair days. I'm trying to be thankful for now that I'm able to hide my hair loss for the most part with the help of a good hairdresser. Still, it would be nice to have a good hair day every now & then. I wonder if the flyaways are caused by the products we're using on our scalp. I use Rogaine and Clobetasol, which are both alcohol-based and very drying. The weird thing is that no amount of conditioner seems to help.
Annie i have the same problem with my hair sticking to my face. The texture has changed so much. It's a lot worse when i apply sunscreen or moisturizer. The hairs in my eyebrows that i grew from the steroid injections go every which way. The dents above the brow line are very deep. I have to laugh though, because i don't want to cry.
Does anyone else have problems with static electricity. I've always had slick, straight hair, but now I have hairs flying around and tickling the sides of my face constantly. It drives me absolutely crazy! Also, all the short new hairs I've grown with Rogaine are standing straight up. It's not just the areas affected by ffa that are electric, it's my entire head. If anyone else has this problem, could you please share how you control those annoying flyaway hairs?
Jules - not a problem. See you all tomorrow ! x
Ladies, thank you so much for your encouragment. I've remained positive since my diagnosis almost 7 months ago, but I wasn't prepared for a flare-up two months after starting Plaquenil. I'm hoping my derm will see enough improvement at my appointment next week to keep me on Plaquenil until I hit the 6 month mark. I think I'll also ask him about an antibiotic. He's always felt like I didn't need one because there's no inflammation & very little redness on the surface, but I know others have had good results taking both.
Rebecca Germany, You questioned taking Plaquenil & antibiotics at the same time. christiekd has had good results using both. I think her doctor prescribed something other than Doxycycline, however. You can read her post on page 30. I go back & reread it every time I feel overwhelmed & helpless. It helps me remember that some of us are managing this awful disease.
Rebecca you can take plaquenil and doxycycline at the same time, I have a blood test once every 3/4 months with the plaquenil to check liver and kidney function. The last time I saw my derm the FFA was still active and I had been using plaquenil for 3 months, I see him again in November as he wanted to give it more time.... the FFA is still active but it is slower than before... He has said next visit he might also give me doxycycline and has mentioned the steriod injections but I am worried about injections because of the dents they can cause... Your treatment plan is definately the same as we are being given in the UK so it seems that all of our derms are using the same drugs and protocols. Best of luck Rebecca with your new treatment. XXX
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