Replies to This Discussion

Permalink Reply by pauliegirl on July 18, 2017 at 5:59pm

Linda from MT and smiletome, Call me obsessed, but are either of you using chemical SPF products (contain sunscreen ingredients besides zinc or titanium) on your face (via any vehicle...moisturizer, foundation, etc.)? I really really (and recently so) think chemical SPF is the common thread of FFA sufferers, along with some other personal issue (autoimmune, thyroid etc). 

To your question smiletome, I have been told by my derm and by a hair replacement doctor that indeed this disease burns itself out but it is completely unpredictable when that occurs for each person. THAT's not helpful, really, to me at least! To think it could stop next week or in 15 years...not cool. As per my recent post, once I stopped using chemical SPF on my face 1 week ago, I have almost no inflammation and the itching and burning of my frontal hairline has stopped. I have stopped using topical prescribed meds as of about 5 days ago becuase I DON'T SEEM TO NEED THEM ANYMORE!! This makes me wonder...does the disease really burn itself out OR are people at some point changing what they use on their face and then the reaction to create the disease stops? Again, call me obsessed, but I think this is really a key point in this so-called mystery disease!!! 

Diagnosed 1/2016. Looking back and understanding the insidious onset of the disease, prior to any obvious hair loss, I had symptoms probably since about 2013-2014 (quick/short/intense/rare pain on frontal hairline when a hairbrush touched it; eventual slow loss of most eyebrows). 

I have lost about an inch on left temple when you count the hair that typically juts in toward your face, about 3/4 in on right at same area, and probably about 1cm at top hairline. 

Wishing you hope and peace, as we with this BS disease really need it!!

Permalink Reply by pauliegirl on July 18, 2017 at 6:56pm

Agreed! It is hard work to stay positive with this!
You should know that it is Mary KAY Day Solution that I have used for 15 years. It has SPF 30. (Other than that I only occasionally use systemic SPF creams on my body since I don't spend lots of time in the sun/outdoors due to work, etc. )I will never touch it again! I used to sell the stuff for many years. The company called themself top-notch in research and development :/ They and apparently many other renowned name-brands are using known harmful ingredients. :( Not acceptable to me now!!!
I certainly don't intend to be negative with the above...just looking at the facts.
I have otherwise only lost hair on my forearms. Which is curiously close to my hands that touched SPF product every single day. :/

I had my brows microbladed 1 year ago...excellent investment and I recommend it highly!

All the best at your appt. Please advise if your derm has anything to add about the concerns/findings. I have a call in to my derm re the SPF issue and otherwise see her next 8/18.
Take care, too!!

Permalink Reply by Airam-FFA on July 19, 2017 at 4:16am

Hi Pauliegirl

I think that the SPF together with an autoimmune condition could well be the trigger. I am going to stop using the face creams that contain SPF (I have been using Moisturisers with SPF for as long as I can remember - all year round). I will have to wear a hat with a big brim to make sure I don't burn.

It will be interesting to see if the itching on my head is reduced. But definitely worth a try.

xOx

Permalink Reply by Liz Lov on December 29, 2017 at 4:13am

I love this phrase
"We can let it get us down, or we can move forward, I do both but work very hard at staying positive."

Thank You
Liz

Permalink Reply by Lori H on June 22, 2018 at 3:40pm

The ONLY thing in my blood work was lack of Vitamin D as well.  Interesting.  Yes, this is exhausting, devastating, upsetting, depressing...it just downright sucks.  I have always been a positive, happy, confident woman.  I had A LOT of stress in my life from others (father's illness and then death, divorce, alcoholism in the family, etc.) but I THOUGHT I was being strong and positive.  When I was diagnosed with this, I felt angry and wondered, "why me"! 

Permalink Reply by Lori H on June 22, 2018 at 3:37pm

Wow, I have religiously used a moisturizer with sunscreen as well as foundation with sunscreen on my face every day since as long as I can remember.  I was diagnosed with FFA about a month ago, but believe I've had it for several years.  I am a 44 year old female and noticed my hairline receding but assumed it was just the normal aging process.  But, it was so subtle that I didn't really notice until I really looked at myself in pictures.  I've had a VERY stressful last few years so, once diagnosed, I attributed it all to stress. I didn't know what stress was until I started reading all these posts.  I'm now on an anti-depressant because this is so devastating to me.  I'm going to lay off the sunscreen on my face and forehead for a while.   Thanks for sharing.  

Permalink Reply by DragonandFox on August 23, 2017 at 11:20pm

I don't think that's true however, unless I have a flareup things have stabilized. I get some wispy hair growth that makes me look fairly normal again. I still have way less hair than I ever did around my temples and my hairline is forever further back, but I have thick hair otherwise and the layers and bangs masks the issue for me. I apply the clobetasol still every night and I use clobetasol shampoo along with the finasteride, but things are status quo. Got diagnosed in 2015.

Permalink Reply by illustr8r on October 23, 2017 at 10:55pm

I use my Clobetasol every other day. Have you ever had peeling along your hairline where you have applied it? This is a new development. I can’t tell if it’s dry skin or dried Clobetasol. I’ve washed my hair in the shower so that should rinse away the medication...at least I would think it would.

I’ve used skin care and make up with sunscreen for 20+ years. I’ve quit that after reading posts here. It all did me no good as I have pre cancer spots that need to be frozen frequently.

I had a Vitamin D deficiency too and a vitamin B-12 deficiency that triggered my last flare...

Permalink Reply by Wompoo on October 22, 2017 at 7:16pm

I’m 12-13 years into this and still experience inflammation and hair loss.

Permalink Reply by Lo on November 8, 2017 at 4:06pm

Are you still able to "hide" your loss - or have you progressed to supplemental hair?  Just curious... I am 7-8 years into this - still losing... but can manage to hide - sort of.

Permalink Reply by Wompoo on November 9, 2017 at 9:13am

I don’t hide my hair loss. I’ve lost 1.25 inches in the front and on the sides. And the back is thinned significantly. I keep my hair long enough to put in a ponytail at the base of my neck if I want to put it up. My friends and coworkers all know and don’t care. At this point this is normal for them and me. My hairdresser once joked with me when I asked at what point do I shave the rest off and get fabulous wigs saying “you can have a three head or a four head but not a five head” as she put her fingers horizontally across her forehead. I’ve taken that to heart. As of now, I’ve passed that “four head” point and i often contemplate shaving it all off. I’m only 43 (so it started when I was only 30-31) and a jeans/T-shirt/tennis shoes gal and although I’ve had my moments of sorrow, it is just who I am.

Permalink Reply by Liz Lov on December 29, 2017 at 4:16am

Great comment Wompoo:

"My hairdresser once joked with me when I asked at what point do I shave the rest off and get fabulous wigs saying “you can have a three head or a four head but not a five head” as she put her fingers horizontally across her forehead. I’ve taken that to heart."

This ffa group is my 'therapy' - helps so much to be around people who just 'get it' !

Thanks,
Liz

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