www.alopeciaworld.com
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
Comment
Hello Terry - welcome.
I hope that it is comforting for you to find other people with this prob. I felt the loneliness initially when I was diagnosed - could not believe it !
But then googling and finding Alopecia World, and subsequently setting up this site - I found it very helpful. But what still surprises me................after one year - we have just 76 members in several countries. This is a rare and little understood and difficult disease to treat. As Carol USA said - it's not life-threatening but certainly life changing.
Terry - I hope you have a worthwhile trip to Salford - I don't know where you live, but there are a few of us who travel some distance to see him. My diagnosis was over 18 months ago when I was living in Dubai. I found the page that was taken from the Daily Mail, a UK paper - there was an article about FFA - the new epidemic among women...........from this I heard about Dr Harries who did a PhD in alopecia. Also mentioned in the article was Dr Carol Michaelides who works at the Philip Kingsley salon in London. I went there and found the experience quite hard to deal with. Having been diagnosed by a derm in Dubai - I wanted to find out more. But I got more of the same - no cure - only acceptance.
I think that Dr Harries is our only hope in the UK. Several of us completed a questionnaire recently and the results are still being processed.
I asked a couple of days ago if there are any of you who can wake up and not instantly think of FFA ?
I still am not going to tell anyone here apart from family. I cannot yet come to terms with wig wearing and I applaud those of you who have.
What is the name of the immune suppressant drug ?
What is the recipe for not letting this take over one's life ?
x
Thanks, Pam. I also contacted CARF because there are no doctors in my state listed as treating FFA that are in my insurance network. A representative e-mailed the article for me take to my doctor. I'm not sure I would have gotten the Plaquenil prescription without it. The doctors in my area seem to be very conservative. CARF will also correspond with your current doctor if he/she has any questions regarding your treatment.
http://http://www.carfintl.org/_articles/drugs-in-dermatology-2012.pdf
Annie and Rebecca, I am attaching the recommendations from CARF about the drugs that are recommended for FFA. I have actually taken this document with me to my dermatologist, who really appreciated it because I am the only one that she has ever treated with this disease. The specialist that I see from UCSD is also aware of these guidelines. Doctors do prescribe immunosuppressant's and they usually work but the disease usually returns after stopping.
Rebecca, prednisone is prescribed for the disease as a bridge until the plaquenil has a chance to begin working. My sister has to take this drug for her autoimmune disease and I know that there are many unpleasant side effects (the least of which is hair loss!) So, I guess we are all going to have to pick our poison based on how much we can all tolerate in terms of our hair loss vs. risk.
There are new biological drugs available now that people with arthritis, psoriasis, and Crohn's disease take - like Humera and a few others that I see on TV all the time. I am just wondering if these would be a possibility for us.
Pam W, I have also been researching immunosuppressant drugs so I can make an informed decision if the Plaquenil/Clobatesol combination doesn't work. From what I've read, the immunosuppressants work by keeping your body from attacking your hair follicles instead of just treating the inflammation. I can't imagine a doctor prescribing immunosuppressants with all the possible side effects. I've seen three different dermatologists since being diagnosed in mid March. All three recommended starting with a topical steroid only. It took a lot of convincing on my part to even get a prescription for Plaquenil.
Ladies - do not worry unduly about thinning skin. Focus more on thinning hair !
I get facial inflammation from time to time and this is connected with the condition. Usually this is around the hairline on my forehead.Apart from the physical probs - is there anyone out there who is able to wake up and not think instantly about FFA ? Certainly the dermatologists don't have the answer to this either ! Interestingly enough.............the first derm I saw in Dubai had thinning hair - used rogaine....the trichologist I saw there also suggested he could do hair transplant....not an option with FFA, and the next trichologist I saw in UK was also displaying male pattern hairloss. I wondered whether this could be contagious.
Only joking !
I hope that those of you in UK are enjoying the lovely weather.
x
my doc recently told me to use the topical clobetasol l week on 1 week off as she referred to the thinning at my frontal scalp as atrophied. I only apply it sparingly to scalp and experience some itchiness through the day. My doc, however, said to sprinkle it on and work through (not happening).
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2024 Created by Alopecia World. Powered by
You need to be a member of Frontal Fibrosing Alopecia to add comments!