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 PamW San Diego, CA, USA on March 29, 2014 at 12:09pm
I am going to jump on the bandwagon. I don't remember dates, but if had a lot of urinary tract infections and sinus infections and took antibiotics several times. Is this a question for Dr. Christos? Could someone reach out to him?

I would also like a recommendation on probiotics. And, who is taking duasteride? I need info.
Comment by Mandy on March 29, 2014 at 9:57am
Hi C my GP told me that he thought that and infection/virus I had in the December which I struggled to get over May have triggered the FFA... He explained that the body had been fighting an infection/virus and the when I was over it my body still thought it was there and mistook the make up of my hair for the make up of the infection/virus??? Who knows x
Comment by Celia on March 29, 2014 at 5:45am

I wonder ?  I have always felt my FFA was triggered by an illness - severe double pneumonia from which it was touch and go for a while - I had a lot of anti-biotics and X rays and took many months to recover - after this my hair began falling out steadily and I was told it was because of being so ill and having lost so much weight. Then 10 months later the inflammation began followed by The Diagnosis.  Can anyone recommend any particular probiotic ? Thanks.  Is there anyone else who feels that medications have triggered their FFA ?

Comment by Maddy, California, U.S. on March 28, 2014 at 4:26pm

I agree. Really interesting comments about the probiotics, infections and antibiotics. I just saw several similarities, so wanted to speak up. First, when I started going through perimenopause, my skin became very oily and I started to have severe acne breakouts...almost like cysts on my face. I was on Amoxicillin for a couple of years. I think my FFA was definitely triggered by a medical condition....while not an infection exactly, I got Influenza really bad the year before my FFA started. It literally took my lungs months to recover (probably close to having an pneumonia). Finally, I actually thought to myself the other day how much better my FFA seems now that I eat an Activia yogurt every morning regularly (for about two months now). I have MUCH less hair shedding. I wonder if we are onto something?

Comment by Jules UK on March 28, 2014 at 4:01pm

Really interesting comments about probiotics.  Does this mean that if I make my own yogurt, it may help? Or is that too simple?  I've just heard from Nottingham that I've been randomly selected to take part in the research into psycho-social affects of alopecia.  My appt is on April 8th.  The Dr sounds lovely. Has anyone else opted to participate?

Comment by Annie on March 28, 2014 at 3:47pm

Anne, I also had a severe ear infection a few years ago.  I took two rounds of Amoxicillin, then ended up having to take Zirithromiacin to clear it up.  I've always wondered if the perhaps the infection triggered my ffa since I'd rarely been sick in my life up to that point.  Regarding antibiotics, I've always had oily skin, and have taken more rounds of antibiotics to combat acne than I can count.  I have been taking probiotics for about three months and have started making kefir, which has natural probiotics. 

Comment by Anne Louise on March 28, 2014 at 11:48am
MJ wouldn't it be great if all we had to do was take probiotics and we could cure FFA?! Ive been taking one on and off since I started Doxy a month ago. After learning more about them I plan to research some more and figure out the best one to take. As far as I can tell, there is not much harm that can come from taking probiotics and there could be a ton of benefits.
Comment by MJ on March 28, 2014 at 11:26am
Anne, that is very interesting. I had taken a bunch of rounds of antibiotics in the year before my FFA seemed to have started. I also took lots of flucanazole to prevent and treat subsequent yeast problems. One time, in the month before I really noticed my balding area, i was actually on a two week course of flucanazole, which I subsequently discovered has hair loss as a side effect. Since drastically changing my diet and reducing stress, I feel like alot of my gut problems have resolved. Interestingly, in the year before my dx I was also taking a probiotic called VSL #3 which is typically given to crohns and ulcerative colitis patients. My colorectal doc told me to take it for my intestinal issues. I stopped taking it once dx with FFA because I got leery of anything I had been taking, including my prescription nasal steroid for seasonal allergies. I just wasn't sure what might have been a trigger. I think I may reconsider the probiotic. Interestingly, the thing that seemed to resolve my bowel issues (tmi) was the slow release iron tab my derm has me on. It is so hard to know what to do...but the one thing I am grateful for is that all of this has really put me on the road to much better overall health and I feel better than I have in a long, long time!
MJ
Comment by Brenda, IL US on March 28, 2014 at 10:39am

KarenGinny.  My derm diagnosed me with FFA and LPP.  She didnt do a biopsy because she said the scarring was so evident.  I too had a bad reaction on my first try at a generic for plaquenil.  When i saw a new lupus specialist he told me to try another brand.  I had my pharmacy order the real drug and ive never had a problem with it.

Comment by Anne Louise on March 28, 2014 at 10:15am
C, I too have read that article you referenced on the efficacy of Plaquenil diminishing after 6 months. I decided to start Plaquenil this week and thankfully have had no short term side effects so far. I plan to give it a try for 6 months, possible 12.

I was at an education conference for nurses on Wednesday and learned a ton of fascinating stuff. It was all about the gut and how it impacts stress, appetite, digestion and mood. The one fact that jumped out at me was that the amount of Lactobacillus, a probiotic, is low in all patients with auto-immune disease. The speaker spoke extensively on probiotics and their benefits. She left us with over six pages of bibliography and references, so I have plenty to read up and study!

In looking back on my own health, I had a severe middle ear infection (first ever in my life) and took two rounds of antibiotics for a total of three weeks. This resulted in a yeast infection that kept returning on a monthly basis for six months. It was during this time that I began to notice my eyebrows thinning. Now I'm wondering if those antibiotics also wiped out the immunomodulating Lactobacillus, resulting in FFA.

The following is an excerpt from an article about Lactobacillus, a link to the article is after that.


Lactobacillus rhamnosus, with its antimicrobial and immune-regulating ability, along with its extremely sticky, adhesive properties, offers an entirely new therapeutic strategy for combating allergic and infectious disease. Our gut microbiota have a powerful ability to prime immune regulation.

http://www.nleducation.co.uk/resources/reviews/lactobacillus-gg-a-p...
 

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