Frontal Fibrosing Alopecia

Information

Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 586
Latest Activity: Sep 6

Discussion Forum

AIP Diet: Did you try it? On it now?

Started by illustr8r. Last reply by sampeckard Sep 6. 15 Replies

3 weeks in-this is what I noticed so far:I lost 7lbs.The first 4 days were just horrid! I felt terrible. After that, the cloud lifted and I felt great.Much more energy. Better mood and feel happier. It's shocking how good I feel. I keep saying this…Continue

Trying a new approach with CBD oil...

Started by Robin. Last reply by Jamalia Franko Aug 9. 25 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

New Treatment Options

Started by Jess. Last reply by sampeckard Aug 5. 19 Replies

Hi All,I got a Google alert for a study I thought many of you would be interested in. Here's the abstract:This study aimed to assess the efficacy of systemic retinoids in treating frontal fibrosing alopecia (FFA). It was based on a retrospective…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by sampeckard Jul 8. 5 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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Finn on June 2, 2021 at 10:04am

Hi

I response to Toby I can attest that using Vanicream's Daily  Mosturizer, and their sunscreen  ( can't remember the name but it is a broad spectrum) and also the same company's shampoo called Fresh and Clear,  ( I use the medicated one) has been HUGE.   It's made by the Mayo Clinic and has zero allergens.. I guess that before using them was part of my problem because I have used these products exclusively for a year now in conjunction with being on Hydroxycloroquine 200mg once a day which I started a year ago also.  I have been on Finasteride for 4 years now - I hadn't really noticed any great shakes from using this to be honest  but don't want to risk stopping it.  I might though because I think it makes your sex drive like zero.  I have FFA and Female Pattern Baldness combined ( oh joy oh joy ) .  But I have to say that this past year ( in a pandemic I might add ) my hair has somewhat grown in!!!!!! , is much thicker and I don't even think about the thin areas for days at a time.  I find it looks best a day or two after washing it as it thickens up but I doubt anyone would notice anymore that I have thin areas.  And they certainly would have a year ago.  Hope this helps someone out there.. Drs. say I am a success story .. Ha.. Oh- I use minoxidil religiously twice a day ( the 5 %).  

Comment by Toby on June 1, 2021 at 3:44am

Hi ladies,  so sorry Lu, I feel your words,  my FFA symptoms increase when I am under stress. Is there any way you can lessen stress?

A doctor at Massachusetts General found in a study that 76% of patients with FFA and LPP were allergic to ingredients in hair products and facial moisturizers and personal care products.  That’s huge.

 Fragrance, gallates, Linalool, methylchloroisothiazolinone, MCI/MI, were indicated as some of the ingredients that patients were allergic to.  The doctor found that without changing anything else in the treatment plan, eliminating the allergen for 3 months resulted in 59% having decreased scalp itch and 70% had decreased scalp redness.  The doctor recommended patch testing to determine what personal care products we may be allergic to.  There were more chemicals than I listed but the chemicals I listed had larger percentages of patients being allergic to that chemical. The doctor said avoiding the allergen greatly lessened the FFA symptoms but did not cure FFA.


Another thing I find interesting is that some products contain formaldehyde releases such as bromopol, DMDM hydantoin, quaternium-15, diazolidinyl urea polyoxymethylene urea, and sodium hydroxymethylglycinate.  We know with FFA our stem cells in our hair follicles are dying so our hair loss is permanent. So why are we washing our hair with formaldehyde?

I will try to find the article and post the link.

Best to all you lovely ladies. I miss the activity on this site.

Comment by Lu on June 1, 2021 at 2:48am

Hi Ladies, it’s been a while ... thankfully my FFA had been relatively stable for the the last 1.5 years. So much so that my Dr started discussing transplant options ... BUT .. over the last month I have had a massive shedding episode. I’m devastated! I can see where the hair has receded behind my ears. It’s looking sparse & wirey & crazy witch like. It’s horrible!! Thickness all over is down now at least 50%. I’ve got a scraggy, thin little pony tail where it used to be thick & lush. I don’t see my Dr again till August- I don’t know I can wait that long for help although I know there’s nothing she dan do :(

Thanks for listening 

Comment by AnnieMay on April 13, 2021 at 11:07am

Hi sammi,

This group has been pretty quiet lately. I wish I had answers for you. I would like to get the same advice!

Ann

Comment by sammi on April 3, 2021 at 4:05pm

Hi, I was wondering if anyone with FFA had any success with hair extensions or Lucinda Ellery interlace system? Looking into both

options as my daughters wedding is coming up and would like to make fringe and sides look fuller. The interlace system seems a big step and very expensive. Any advice would be greatly appreciated.

Comment by Dyners on February 28, 2021 at 1:51pm

hi CurlyK,

Wow I think that style looks really great on you! 

I haven’t been on here in a while, but nice to read through all the comments. 

Thanks so much for sharing.

Comment by CurlyK on February 6, 2021 at 1:27pm

Trying a new bonded hair piece. One with a little more sass!

Comment by Elizabeth W on November 3, 2020 at 9:52pm

Here is a link to  PUBMED abstracts about the link between getting flu shots and other vaccines with Lichen Planus.  https://pubmed.ncbi.nlm.nih.gov/21051866/

All you get is a summary. You can click on the DOI number and get the image of the first page of the article. It looks like they have case studies.  These articles about at least 10 years old.

I've had flu shots since the late 1970s and my last one on September 1, but my lichen planus symptoms started about a month before the shot.

Comment by Maddy, California, U.S. on November 3, 2020 at 7:01pm

Hi Louise,

My story sounds very much like your own. Mine started in 2006. I had a really BAD flu in 2005, so in 2006, I got my very first flu vaccine. Within a few weeks, I noticed red bumps on the hairline on the top of my head and one of my temples started to thin. Didn't connect it. Got another flu shot in 2007, both temples thinned and noticed a bit of loss on the hairline on top...still didn't connect it. After my third and final flu shot in 2008, I lost all hair on my temples and about 1/2 inch on top. Finally...I connected it and went to several doctors (endocrinologist and immunologist) who both said that the flu vaccine could be causing it (all the derms I went to said it wasn't likely connected). Anyway, long story, sort of short, I have not had a flu shot since and I have not had any more hair loss or flare-ups. Oh, and, my brows thinned in there somewhere too and hair on arms is almost completely gone. Anyway, just wanted you to know that you are not alone with this connection!

Comment by Louise on November 3, 2020 at 6:42pm

Hi Maddy, 

You can communicate with me in this site. 

Best regards 

Louise

 

Members (586)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2021   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service