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Frontal Fibrosing Alopecia
Information
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 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
Trying a new approach with CBD oil...
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
Man with FFA. New member.
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
Dermatologists who specialize in alopecia?
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
Comment Wall
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Comment by Jules UK on November 13, 2014 at 2:40pm
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Had a call back from my lovely GP and I can't take St Johns Wort whilst taking Plaquenil. Time to fall back on yoga.
Linda, I found focussing on diet and exercise was a good distraction and helped me feel I was doing something positive for myself in dealing with FFA. Keep in touch with the forum. That also helps, a lot!
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Comment by Sas Holland on November 13, 2014 at 2:17pm
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Hi Annie, thanks for letting me know, that's already a quick result, because I understand it normally takes a few more months to notice any difference
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Comment by Annie on November 13, 2014 at 1:38pm
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Sas Holland, I have been avoiding gluten, dairy, eggs, peanuts, soy, sugar (& artificial sweeteners), & corn for about 6 weeks. I am also trying to eat lots of veggies & fruits & very little meat. The area of my scalp that has been affected by the ffa is definitely less red, so I think the change in diet is helping. As an added bonus, I've also lost weight & my joints are less achy.
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Thanks Debs. How do you find these things? I've requested a call back from my GP about the St Johns Wort.
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There's a great autoimmune summit going on on-line right now...and it's free. Each day there are a number of discussions with leading experts in the functional medicine world. The videos are only available for 24 hours, new videos go on-line each day. If you're interested you can check it out here: http://autoimmunesummit.com/
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The stem cell transplant sounds exciting and hopeful. Goodness knows we need some light on the horizon.
I'm in the process of moving house and since stress seriously affects my FFA, I bought some St John's Wort. However, in the leaflet it says not to take with immunosuppressant drugs. It doesn't name hydroxchloroquine but I don't know whether to risk it. Any thoughts? X
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Comment by Jen S. on November 13, 2014 at 9:57am
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MJ - how is the Ellidel working out?
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hi everyone,
Donelle, I may have a hair stemcell transplant (the donor area will keep its hair follicles, so you don't loose it there), which is only done for a couple of years by the hair Science Institute in Holland to my knowledge. I spoke to them this morning on the phone, they will only transplant 50 grafts of hair stemcells as a test and the costs will be 570 euro. I then have to wait 9 months to see if it stays. They tell me they have doen it now in about 50 or so woman with FFA, but only very recently. 80% of them keep the new hair. So they stress out that they really don't know the effects on the longer term yet. So it is indeed expirimental on FFA patients, thats why they will only do it if you take the Cyclosporine.
Indeed Catherine it is such a difficult decision whether or not to take Cyclosporine.
I am also considering to start a diet of eating lots of organic fruits en vegetables and no gluten, no red meat, no sugar and no refined carbs. Has anyone tried something like this?
I will reconsider taking the Minoxidil Donelle,
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I was on Cyclosporine for about two months and had no side effects, but decided to come off it as I was feeling increasingly uncomfortable about being on such a potent drug. It is such a hard question we all have to face: is it worth taking potentially harmful medication for a condition that is absolutely horrible but which is not life-threatening? It is a very personal decision. Initially, I was so traumatized by my diagnosis that I was ready to take anything, but now I am not so sure...
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Comment by Donelle on November 13, 2014 at 7:35am
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Jodie Thanks for your info re cyclosporin. I have to admit I was put off after reading the info sheet. With any of these powerful, off label drugs its always a matter of balancing the risk. I am planning to go to the conference in London tomorrow. I will ask Dr Christos and the others what they think of Toctino and I'll let you know what I learn. Best wishes.....
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