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: 585
Latest Activity: Dec 7, 2020

Discussion Forum

Success with any drug

Started by Erika B. Last reply by Amerycol Dec 7, 2020. 24 Replies

hi Everyone. I'm new in this group and so grateful to have found it.I am female, 41 and also newly diagnosed. So I am on rogaine x2 a day and on a greasy cream called Pro-topic- which makes no sense because I don't know how I will be in the public.…Continue

Plaquenil ( hydroxychloroquine) and covid 19 symptoms

Started by Liz Lov. Last reply by BubbaLu Dec 4, 2020. 6 Replies

Hi all,As hydroxychloroquine ( Plaquenil) is a hot topic right now and is being discussed as a possible treatment for Covid 19, I would be interested in whether anyone here who actually takes Plaquenil has had symptoms of Covid 19?I was once offered…Continue

Tags: covid19, hydroxychloroquine, ffa, plaquenil

Botox and FFA

Started by 2Dachshunds. Last reply by BubbaLu Dec 4, 2020. 10 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

Is household mold a trigger?

Started by Sarah. Last reply by Bill_Andrews Nov 30, 2020. 4 Replies

Hi all,This is my first post, I'm new to the forum, but have so far found the discussions very enlightening.  I was wondering if anyone has heard or noticed anything about mold in the home being a trigger. I moved into my apartment a year and a half…Continue

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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

Comment by Maddy, California, U.S. on November 3, 2020 at 6:29pm

Hi Everyone, I am wondering if someone can help me with this technical issue. I received an email from this site (which I am a member of) from a member named Louise. She was asking about possible connections between FFA and the flu vaccine. I have looked everywhere on this site, but cannot actually find her post or discussion, and it's not in my inbox, even though the email said it was sent out to all members of the FFA group. Anyway, I would like to respond to her, but I can't find her. If anyone knows how I can find her message, please let me know. Thank you so much! 

Comment by illustr8r on September 26, 2020 at 3:13am

Hi ladies!

Yes, it’s been awhile since I was here too. So long that I was logged out from the site. It’s nice to see familiar names pop up in the notifications.

I’m happy to report that I’m still fairly stable. Still using castor oil 3-5 times a week. I got lazy about doing it initially during lockdown and I noticed increased shed-so back to being diligent about it. I let my pixie grow out because of lockdown. Once I got back to my stylist I kept some of the length and it’s a modified bowl cut, inverse Dorothy Hamilton or early Justin Bieber. It’s kinda fun. 

I had my brows redone. It’s been over 3 years and the old microblading had faded a lot. This time I got hybrid brows. They look great and the healing process was much easier and quicker than plain microblading. I got back in 2weeks for a touch up and then they will be perfect. This stylist plans for yearly touch ups. I’m going to do that. I don’t miss drawing these suckers on every morning!

I hope everyone has navigated COVID and the lockdowns okay where ever you are. Stay safe and healthy! 

Comment by Elizabeth W on September 25, 2020 at 11:51pm

HI Afraid,

Thanks for your kind words.  I think my hair loss has been stable for a couple of years.  My photo is 2 or 3 years old. 

It has been a stressful time. I am not sure why there has been less activity on this forum.

Comment by Afraid on September 25, 2020 at 10:57pm

Hi Elizabeth

thank you for sharing, I hope the cream works quickly and relives the symptoms for you.  I too have FFA, LLP and LP.... feels like a curse doesn’t it.  

Can I ask if your hair loss has stabilised?   It looks good in your photograph.  

The activity in this thread has reduced significantly...I wonder how everyone is and if this condition is influenced by stressful situations how everyone is responding to Covid-19? 

take care Elizabeth 

Comment by Toby on September 25, 2020 at 6:34pm

I should add that I have FFA.

Comment by Toby on September 25, 2020 at 6:34pm

Hello Elizabeth, I just want you to know that we are here for you and understand what you are going thru.  I do have eczema but I do not have psoriasis.  I had my first appt today with my dermatologist. I had 2 prior teleconferences due to covid. I have not tried the cream you reference but I guess I would trust the doctor’s recommendation.   We are with you as you go thru this.  All the Best!

Comment by Elizabeth W on September 25, 2020 at 4:02pm

this is an update on my previous post when my dermatologist and I thought I had psoriasis on my left arm.  I had a biopsy last week  My dermatologist called me today with the diagnosis.  I have lichen planus. 

She is prescribing Fluocinonide 0.05% cream.  Have any of you used this cream?

I am wondering about the relation of his lichen planus to lichen planopilaris, which apparently causes Frontal Fibrosing Alopecia.

Also in reading about lichen planus, I found that you can get it if you have had hepatitis C.  (I might have had an undiagnosed case of it or received a transfusion as an infant of hepatitis tainted blood.)  It also can be a reaction to flu shots.  I had my shot earlier this month.

 

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