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: 584
Latest Activity: Oct 9

Discussion Forum

UK: GP letter as medical proof for passport photo & airport security with headband?

Started by Kat. Last reply by Demixl Oct 9. 3 Replies

Hi all,have any of you in the UK, had an official letter from your GP, to proof that you are wearing a headband for medical reasons for passport-photo application and for security at the airport?My GP surgery just had me removed to tears as they…Continue

Plaquenil ( hydroxychloroquine) and covid 19 symptoms

Started by Liz Lov. Last reply by KarenGinny - Iowa, US Sep 27. 5 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

Hair pieces

Started by Flowers_. Last reply by Maz Sep 23. 1 Reply

I think I may have just sent this topic as a message to everyone, my apologies I am not the best at technology.I have had FFA for a number of years and I am now looking into getting a hair piece or a “topper”. I spoke to my hairdresser who said a…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by JakeHodges1985 Sep 22. 9 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

Comment Wall

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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.

Comment by Elizabeth W on September 2, 2020 at 9:00pm

Hi Annie,  I am not sure if it is psoriasis. This is what my primary care doctor thought it might be.  She prescribed Methylprednisolone that I took last week and she told to call her back if it did not improve.  She was going to do a biopsy.  I had what looked like mosquito bites on my left arm. they itch.  I have an appointment with my dermatologist later this month.  I still need to get back to her and see if I need to try to get an earlier appointment with the dermatologist.

Comment by AnnieMay on September 1, 2020 at 10:29pm

Hi Elizabeth, I'm sorry you're dealing with this. I don't have psoriasis but I have so many crazy skin issues from FFA it's depressing. This insidious condition is so much more than hairloss. 

Comment by Elizabeth W on August 26, 2020 at 9:29pm

How many of you have psoriasis?   About a month ago I started getting bumps on my arms that look like insect bites.  My primary care physician suspects it is psoriasis and has sent out a sample for testing.  I have a scheduled appointment with my dermatologist next month.  Does psoriasis go along FFA which is an autoimmune condition?

Comment by Elizabeth W on July 20, 2020 at 4:19pm

How many of you attended the Hair Necessities virtual CARF conference on Saturday?  What were your impressions of the conference?

 

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