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 Brenda, IL US on December 17, 2013 at 5:58pm

Alice, zyrtec has stopped the itching but it does cause my mouth to be dry.  I didnt have itching until a couple of months ago and it was driving me crazy.  I sip on water often to alleviate the dryness.  I take zyrtec, plaquenil, and doxycycline as prescribed by my dr.  I have to have my eyes checked twice a year while on plaquenil.  My eye dr gave me a chart to check my eyes each day but ive been on plaquenil so long that i forget to do it.  I was taking plaquenil for lupus a long time before i was diagnosed with FFA.  I have blood work done twice a year. 

Comment by Maddy, California, U.S. on December 17, 2013 at 5:52pm

I am wondering the exact same thing MJ! I have some Claritan sitting here on my desk! The study that everyone is referring to happened to study Zrytec...but that's all I know.

Comment by MJ on December 17, 2013 at 5:07pm
Thanks Maddy. Now I am wondering if the supply of Allegra I have from spring allergy season would be equivalent or if there is something specific to zyrtec...
Comment by Maddy, California, U.S. on December 17, 2013 at 5:03pm

Hi MJ, I do not have any scalp irritation either...just the hair loss. I think the theory behind the Cetirizine is that this is some form of allergic reaction that makes our autoimmune system go haywire...something along those lines. I'm sure someone else can explain that a bit better :). 

Comment by MJ on December 17, 2013 at 5:00pm
Hi all, are you taking the antihistimines strictly to ease itching and scalp irritation or is there another theory behind this? I dont have any scalp irritation and was wondering if this was something I should add to the hydro and clobetasol lotion regime? Does anyone know of others with FFA that dont exhibit outward systems aside from the hair loss? I am new to this! Thanks. MJ
Comment by Polly UK on December 17, 2013 at 3:38pm
I'm still taking 10mg Cetirizine each night and inflammation is much better and the added bonus that I'm sleeping well. I also take 400mg Hydroxychloroquine daily and was prescribed an antibiotic early this month but haven't started taking it yet. I've been given the all clear to carry on with hydroxy following blood tests and will probably hold back on the antibiotics until I've spoken to my derm early in January. I'm sure taking Cetirizine with the antibiotic isn't a problem but would like to check first. Good luck everyone xx
Comment by Maddy, California, U.S. on December 17, 2013 at 2:29pm

Hi Celia, Do you have to drop the antibiotic if you start taking the cetirizine? I am considering to start on it too, but I am also on Doxy, and don't see my dermatologist until late January.  Thank you, Maddy

Comment by Alice on December 17, 2013 at 2:27pm

Brenda, how are you getting along with the zyrtec? I haven't tried it yet but did try claritin, another antihistamine that my husband takes for allergies. It seemed to help the itchy scalp but made my eyes, nose snd mouth very dry, which seems worse than the itching. I've also had the same problem with benedryl, when I tried using it for sleep. I'm wondering if zyrtec is different than these others.

Comment by Celia on December 17, 2013 at 1:39pm

I saw cetirizine in the chemist at around £7 for a month's supply.  It's available on Amazon for just over £1.  I am going to try this even if it means dropping the anti-biotic I am taking. 

Comment by Celia on December 12, 2013 at 5:28pm

I posted on Dec 5th that my GP categorically said that liver and kidney function tests are unnecessary with regard to using Plaquenil but that vision monitoring IS.  I was told by the secretary to my dermatologist that the results of blood tests done automatically go to my GP.  I asked the GP to check and there were no results.  I have requested copies of the test results from the derm as I would like to see for myself how the process works.  My GP had liver and kidney function tests done for me anyway and the results were fine, but I have asked for a printout of these.  I guess I just feel more confident if I know what is going on.

 

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