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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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Welcome to newcomer Betty. Sorry you have FFA, but we hope you will find this forum helpful to you. I wonder what your story is, I couldn't find you anywhere - I hope you're able to navigate this - it isn't difficult and if you read back ( there's loads !) there is a lot of information that might be of use to you. Best wishes.
Pam, I am seeing Dr Harries and I am using exactly the same drugs as you. I am taking both the doxycycline and hydroxy for 6 months then have to go back to be reassessed.
Flu jab - I did ask about this. I was told that it is OK to have a flu jab with these drugs.... BUT I have decided I am not going to have the flu jab because I don't want to stimulate my immune system as it is in overdrive already. I am also not going to renew other vaccinations when they lapse ... I will have a few essentials but the ones I keep up to date in case I travel to tropical destinations I will not renew. For the past 20 years I have kept all my vaccinations up to date and this has been everything; yellow fever, typhoid, diptheria, hepatitus etc.. so I think my immune systems needs a rest especially now I am autoimmune.
I saw Dr Harries last week, who prescribed doxycycline antibiotic for me, two tablets twice a day, as well as keeping on taking the Hydroxychloroquine, plus Dermovate scalp solution, as it is stronger than the Synalar gel which I have previously been using. Feel fairly depressed that I am just taking more and more drugs, and the hair loss doesn`t seem to have improved at all. Now I am scared that if I stop them it could get worse!
Interestingly I also went to see a trichologist locally in Evesham, Sally-Anne Tarver, who says she is seeing more and more patients with this condition - she says that she reckons it is far more common than people think. We also discussed the possibility of laser hair treatment for this condition - it could perhaps be a suitable topical treatment - has anyone had any experience of this?
I think the triggers for this disease are different for everyone. For me, the flu shot always makes me have a big hair shed. I had Influenza, BAD, in 2006...and afterwards, started to notice a bit of thinning around my temples. The next year, I decided to get my first flu shot (2007), and that was my first MAJOR hair shed...lost most of the hair from my right temple. Then, nothing for a year. The following year, 2008, got another flu shot and lost most of the hair from my left temple area and the rest of my right...then nothing for the rest of that year. I got one final flu shot in 2009, and that is when I started noticing a lot of thinning around the top of my hairline. I have not had a flu shot since on the recommendation of my endocrinologist. She believes that is my trigger...or, at least, one of them. I am going to see an immunologist in a few weeks to discuss this with him...and also to find out about the Shingles vaccine. I'd like to get it, but am so scared that I will have no hair left. Ugh. Again, I think this all varies from person to person though.
I have had pneumonia in the past. so always get a flu shot. My thinking is that I'd rather give my immune something "real" to fight, instead of my hair.
Does anyone know if it is okay to have flu injection I usually have it every year but I'm worried it may compromise my immune system? I wondered if anyone has mentioned to their derm. as I did read something a long time ago regarding side effects?! best wished Sammi
Hi All! I watched the Youtube video about autoimmune disorders and digestive issues - leaky gut syndrome. I have been diagnosed with IBS and have had pretty bad digestive issues for some time. I have been toying with changing my diet, but haven't done it yet because it seems too difficult right now since I have a husband and 3 kids. Preparing separate meals for myself always seemed a bit daunting. However, after doing some research on "leaky gut", I think I am going to give my diet a much needed overhaul. I just read the book "Digestive Health with REAL Food" by Agalee Jacob. It does an amazing job of explaining all sorts of digestive issues and the link with autoimmune disorders. So, here we go. Will let you know how it goes. It would be nice to feel better and help both my issues - digestive and FFA. I'll keep you posted.
Hi All,
I'm wondering if anyone has had the same experience as I'm having. I was having trouble with Clobetesol irritating my scalp, so my doctor switched me to Bethamethasone topical 2 times daily. I have been using it for three weeks, and the redness on my scalp has almost completely disappeared. I don't know if it's the new topical that made the difference or if the plaquenil I've been taking for 4 months is finally starting to work. My problem is that even though my scalp looks much better, it's still very tender when I style my hair or the wind blows it around. I guess I expected that when I got the redness under control, the pain would subside. Can anyone tell me at what point my scalp should stop being painful?
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