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: 602
Latest Activity: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

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

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Comment by Liz on December 7, 2013 at 6:30pm

I am thinking of trying the Paleo diet to see if it helps with my inflammation. Before I invest in any books though I would like to ask if it is a diet which a vegetarian could follow?

Comment by sallylwess on December 7, 2013 at 2:50pm

I actually was diagnosed with FFA by a biopsy in April of 2013.  That month I also quit taking the heart medication.  (My doctor gave me permission, but not her blessing.)  I am doing better with the arrhythmia also.

Comment by sallylwess on December 7, 2013 at 2:49pm

I am finding the discussion on allergies quite interesting.  I am making so many links to my own history.  I can't take Zyrtec, but do take Allegra.  I am going to begin taking allergy shots soon.  My allergies and hair loss went into high drive when we moved a year ago.  We moved to an area where I am surrounded by things I am allergic to.  I can't take benadryl or prednisone.  I have heart arrhythmia which is aggravated by many allergy medications.  

When I started Flecainide for the arrhythmia, I broke out in rashes, saw great hair loss, had nausea, and even began experiencing attacks of pancreatic pain.  When I was told I had chronic pancreatitis, and I was having acute stomach pain, and esophageal problems, and my hair changed color from silver gray to nearly black, I quit the Flecianide.  My rashes, pancreatic pain, nausea, and my esophageal problems went away.  I am not currently experiencing much hair loss, and my hair is becoming silver again.  

Also, my levels of inflammation are down in blood work.  

Comment by PamW San Diego, CA, USA on December 7, 2013 at 1:51pm
A few months ago, I experienced two separate bouts of hives. Both times my dermatologist said to take one Zyrtec a day and Benadryl at night for the itching and discomfort. Last weekend, I was having problems with burning and itching scalp. I took a Benadryl at night and it knocked down the inflammation considerably, to the point where I had one of the most comfortable weeks ever. I think histamine is made in our adrenal glands, which also control other hormones. Maybe there is some connection. April, what year was the study you cited published?
Comment by Debs on December 7, 2013 at 12:10am

Cetirizine sounds like another tool we can use to treat our FFA... Any ladies seeing their derms soon can you ask please about this ?

Comment by Polly UK on December 6, 2013 at 1:11pm
Thank you April for the info about Cetirizine. I have 10mg tablets which I take for allergic reactions eg. Stings, mosquito bites, flu jabs etc and I have taken one when my scalp is inflamed and it definitely helps. 30mg seems quite a high dose dose and I would probably spend all day asleep as although it says it's non-drowsy, it makes me slightly drowsy. I think I will start taking one tablet every day in the evening and see what happens. Thank you x
Comment by April on December 6, 2013 at 1:05pm

I didn't realize Zyrtec was cetirizine!  Maddy, I have intense itching on my scalp, torso, and legs but no rash.  I also have sensitive skin and get hives very easily.  I have terrible weird reactions to tons of foods, medications and supplements.  I can go on with my long and pathetic list of symptoms...Anyhow, hoping to try to get to the bottom of this: )

Comment by Maddy, California, U.S. on December 6, 2013 at 1:00pm

I believe that Cetirizine is available over the counter....at least in the U.S. as Zyrtec.

Comment by Brenda, IL US on December 6, 2013 at 12:56pm

Thanks for the boost Celia.  I'm trying to look at the bright side.  I've been taking plaquenil for about two years.  I use clobetasol solution and desonate gel.  I'm taking turmeric, biotin, vit D, and Viviscal.  I wash my hair with zinc shampoo and use free and clear conditioner.  What April posted makes sense.  All of my blood tests show basophils, monocytes, and esonophils sky high.  I understand that these are allergy markers.  I'm going to call my derm now and ask for ceterizine.

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Comment by Maddy, California, U.S. on December 6, 2013 at 12:45pm

Thank you for all of that information April! This is really interesting stuff! While my scalp is not red or itchy, my skin sometimes is...especially on my arms and torso. I get welts when I scratch (Urticaria)...some days my skin feels very sensitive and itchy and other days, nothing. I was taking a Claritan (anti-histamine) once a day for a long time because of it. Now that I think about it, my hair loss seemed to be stabilized during that time period. This makes me wonder if I should go back on it. 

 

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