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Comment by AnnieMay on July 16, 2018 at 11:11am

My skin feels so thick too. Like leather all over my face. And very mottled on the sides by my temples where my hairline is getting so thin. Makes me look so much older than I am. With our experiences with micro blading it makes me nervous to have micro needling done??

Losing hair where I want it but then I have strange little light vellus hairs showing up on my face that I don't want? on my chin, temples, upper lip?? Has anyone tried derma flash? 

I hate the shine too which is especially awful during the summer. You're right it doesn't get tan. Thank you Minter. I'll try the Rimmel Insta Fix! 

My hair is now also very thin on top and the sides and with the summer light you can really see my scalp through my hair. I've been using the Joan Rivers Great Hair Day powder and it really helps. So much work to try and feel somewhat normal everyday. Exhausting. . .

Comment by Donna on July 16, 2018 at 10:28am

Minter - I’m glad to see your comment on the microblading. Your tech commenting on how thick your brow skin was. I just had the same experience & googled it but didnt see anything specific to eyebrows being thick skinned. My lady that did mine also commented on my brow skin being thick. It was all going smoothly kind of painless until she got to that part. I’m going back for my 1 month touch up. I hope she is able to penetrate the skin without too much pain this time. 

Comment by Minter on July 16, 2018 at 9:00am

Annie May, my skin has changed so much too, I hate it! So bumpy and rough, when I was getting my brows done the tech kept commenting on how "thick" my skin is :-(  she pretty much gave up on doing the actual microblading as all the different blades she kept trying weren't going in deep enough and it was getting really painful, she decided to go for a powdery brow instead, they look great, but still...... anyway,  I tried Retin A a few years ago and ended up at Urgent Care because of a really bad reaction, severe hives and redness, itchiness, oh it was awful! Don't know if it was because of Stupid FFA or just my own sensitivity though. 

Oh one thing I have been meaning to post here, my "shiny white hairless band" at the hairline is also the bane of my existence, I HATE the shine and have tried primers, powders & even talcum powder of all things (read somewhere that is what guys sometimes use on their bald head to get rid of the shine) it does work somewhat, but adds to the paleness :-/  

I picked up Rimmel Insta Fix & Matt the other week as I had a coupon ;-D but still it was only like $6-$7 anyway, it really works! I blend it with a contour powder or bit of bronzer now as it is summer and even though I am getting a little tan on my face, of course the weird pale hairless band does not seem to really tan, which is par for the course with Stupid FFA. But the powder really hides the shine, so thought I would pass it on!

Comment by Afraid on July 16, 2018 at 12:23am

Thanks for your reply Plf x

has anyone considered they may have coeliac disease?  Another of my denial strategies is constantly exploring alternative diagnoses!!!  

Comment by AnnieMay on July 15, 2018 at 1:00pm

Hi Jess, I tried Retin A and it irritated my skin. My skin is so sensitive now. I know it can dry your skin out a lot of at first so I might give it another try and take it slower this time? 

Comment by Jess on July 15, 2018 at 12:41pm

AnnieMay, did you mention before that you used Retin-A? I think in the notes provided about the CARF conference, Retin-A and laser treatment (I'm assuming IPL or V-beam) were recommended. I'm still exploring options myself and am curious what you've tried so far.

Comment by AnnieMay on July 15, 2018 at 11:17am

Hi all- Has anyone had micro needling done? It's basically like derma rolling but deeper. The texture of my skin has changed so much with this stupid disease. The aesthetician I see suggested it and she thinks it will help but of course I worry about it. I know I had some scaring after microblading my eyebrows. After one year I need to get them redone which I'm not looking forward to. Ughhhhhhh

Comment by Plf on July 15, 2018 at 3:45am

Hi afraid, yes I continue to be in the denial phase, I am drinking my 2 cups of organic spearmint tea a day, olive oil to eyebrows, and refusing medication.  I think I'm at the acceptance phase now..well till those horrid red spots appear around my frontal hair follicles again.  

Comment by Afraid on July 15, 2018 at 3:41am

Does anyone suffer from tender areas on scalp or areas ridges on scalp?

Almost 8 months into use of clobestal and hydroxychloroquine and my hair shedding constantly, for example, when I touch my head, or wash my hair.  Loss around perimeter of hairline and temples continues with no signs of stopping. Losing eyebrows.  Rash on chin. 

dermatoligist recently wrote to me to say she had read the journal article I had suggested re Finasteride and said she agreed it seems to help...[i didn’t imagine I’d ever be in a position to signpost up to date information to a consultant dermatologist!!!]. However I’m now worried about taking due to side effects...linked to cancer and weight gain?? 

Do any fellow FFA/LLP sufferers continue to cope by ‘denial’ ? 

Comment by Joy on July 14, 2018 at 4:11pm

Has anyone that has been lucky enough to become inactive had surgery and if so did you medicate with anything before surgery and afterwards did you have a flare - also what kind of surgery

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