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 Annie on December 12, 2013 at 10:46am

Hi All, Just a note for those (including myself) thinking about using Zyrtec.  The side effects listed include a small chance of liver damage.  I'm definitely going to ask my derm at my 3 month appointment in January since I'm currently taking Plaquenil, which can also cause liver damage.

Debs, thanks for your information regarding the Dermaroller.  You are such a blessing!  It might be something for me to consider in the future.  I can tell that my scalp is very slowly getting better.  I noticed this morning that it no longer hurts when I put my sunglasses on - a small thing, but a blessing nonetheless.

Comment by Debs on December 11, 2013 at 2:26pm

Annie, 'yes' I use it on the first 2 inches of my hairline, so basically the next bit of my hair that is going to disappear!!!! I don't get any pain from my FFA so it is OK for me to do but I can appreciate for those ladies that have painful scalps the dermrollers would be a problem.  I only use it 2/3 times a week as you are supposed to let your scalp heal in between rolling (or needling as I like to call it).  This is just one of many methods we are using to try and control our FFA, if you are unable to use it Annie please don't worry, it is just one of several options that I and other ladies are pursuing.  

Comment by Annie on December 11, 2013 at 12:51pm

Hi All,  Just wondering how those using the Dermaroller are getting along.  Are you using it on the areas where the ffa is active?  I think those areas would be too painful for me to tolerate it at present.

Also, for those taking Zyrtec:  How much are you taking each day, and how are you tolerating it?  Are you taking it along with the oral meds prescribed by the doctor?

Thanks in advance for sharing.  I so appreciate everyone who shares their experiences.

Comment by Brenda, IL US on December 10, 2013 at 5:18pm

I'm awaiting word from Dr. Mann.  Just mailed the survey form to her today.  I listed my meds and included zyrtec.  When i hear from her i will let you know what she says about zyrtec and if she needs more participants.  I dont know if i will be able to see her in person.  My derm is Dr. Musiek at Washington University.  The zyrtec has stopped my itching.

Comment by Annie on December 10, 2013 at 11:18am

Brenda, I live in Missouri, approximately four hours from Washington University in St Louis.  I would be willing to participate in the study if more participants are needed. 

Comment by Debs on December 10, 2013 at 3:13am

Hi Brenda, great news that you are going to see Dr Mann and she is leading FFA research, can you let us know what she thinks about using the Zyrtec for FFA.. and if so how much do we take a day? for how long? and is it safe to take with our other drugs like hydroxychloroquine sulphate and tetracycline antiboitics  ?

Comment by Brenda, IL US on December 10, 2013 at 12:19am

I received a letter from Dr. Caroline Mann from the School of Medicine at Washington University in St. Louis, MO.   She's the Principal Investigator in Dermatology that's doing a study of FFA.  Since i'm being treated for FFA at Washington U I'm being asked to participate in the study.  I have to fill out a survey and await further word.  I'm also going to let her know about our group and Alopecia World.

Comment by April on December 8, 2013 at 3:50pm

Pam, the study was from 2010

Comment by Debs on December 8, 2013 at 6:09am

Liz, check out Dr Joel Furhmans diet advice and Dr Andrew Weil.  Dr Furhman is a more restrictive approach but is virtually vegan, his auto-immune protocol is on the internet.  I have downloaded it but can't transfer it to this site because there is a small fee (I think it was about £7) and it is not possible to send as an attachment. 

Comment by Brenda, IL US on December 7, 2013 at 8:24pm

I took a Zyrtec yesterday and today.  Last night i noticed that my scalp wasnt itching as bad as it had been in the last two months.  Today there isnt any itching and the inflammation isnt as bad.  I'm keeping my fingers crossed and will keep on taking Zyrtec.

 

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