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Comment by Diane on March 25, 2019 at 4:45pm

Has anyone had results with Plaquenil?  I went to my dermatologist today and she said she has patients that have seen results with it and she prescribed it for me.  Now I have to figure out if I want to try it.  

Comment by Halfbakedwho on March 25, 2019 at 12:49pm

Hi again, 

it seems that the hardest part for me is not knowing how I'll look in six months, a year, etc. I look at older women and know that I will probably have an additional challenge of a wig or whatever. I too have thick hair all over but on top, and none in front. 

I love my Coke Zero! I am trying to give it up but it's really hard. I have been saying this for YEARS btw, with periods going without it, then, it just comes baaaaack  ; ) But attempting to eat now no gluten and no dairy... if I still drink that garbage does it cancel out all the healthy eating?? Uh, yes. OR maybe not...

My eyes are so dry I can barely see this screen. 

Comment by Bloomingdalekid on March 25, 2019 at 11:49am

This disease certainly toys with our emotions, doesn’t it?  I experience both good and bad days and do my best to not let this disease define me.  I have found numerous options that make me feel better out in public.  Most of the time I wear a custom made human hair partial wig... actually called a lace topper that I attach with tape.  Other times I wear a Bella Tres topper, put it into a ponytail and throw on a baseball cap.  I also own two baseball caps that have hair attached to them, and they look great!  I live in California where women wear hats all the time, so maybe it’s a little easier and more widely accepted.  Go to headcovers.com and look at their many selections of baseball caps with hair..... better days ahead, hopefully, for all of us.  We are the pioneers for a future generation that will undoubtedly have the same concerns about FFA.  Hopefully the doctors will find a solution so others don’t have to deal with this!!!!!  

Comment by Kandy15 on March 25, 2019 at 11:07am

Thank you Afraid and Minter for your caring concern. I definitely have up and down days with this condition.  It seems that the weekends are the worst times for me.  On those days I don't fix my hair all up like I would to go to work so it looks icky and the glaring forehead hair loss is noticeable.  Also, my husband passed away 9 years ago and my kids are grown and gone with families of their own so I have some loneliness issues going on.  I used to be involved with Zumba and had made some friends there but since FFA came into my life I have stopped going because of my hair.  Headbands don't really help. 

Anyway, I'm feeling better today because my make-up is on and my hair is rolled with bangs that cover the loss to a certain degree.  I will go back to the dermatologist on April 3 with more questions.  Usually get no answers though.

I appreciate this site so much.  Ladies that understand how I feel is so important.  Hugs to all. 

Comment by Minter on March 25, 2019 at 9:08am

Kandy15, I hope you are feeling better today, I also hope you have some luck with your medications and you notice a change for the better soon.   Hugs to you and keep posting, both the good and the bad! That is what we are all here for each other for :-)

Comment by Afraid on March 25, 2019 at 3:07am

Dear Kandy 15

so sorry that you are having such a tough time with this condition.   My hair scenario sounds very similar.  It’s probably early days re hydroxychloroquine and if it does work it may be subtle differences in your condition.  As awful as you feel now try to remember that you will have better days.  One of my ways to handle it is to think actually most people aren’t looking at my hair...that this might be the best I look etc etc it is incredibly hard though but you will have better times.  Big hug x 

ps. Not willing to try the harder line medications

Comment by Kandy15 on March 23, 2019 at 5:46pm

I am feeling quite anxious again today.  I've had to try to hold tears back because I'm feeling so down.  I've been taking hydroxychloroquine for 3 months now and continue with the clobetasol and I don't see any signs of stopping my progression.  I was told it would take 3 months to start seeing results and, well, here we are......

I have so much hair all over my head except for where I need it in the front and on the sides.  My ear on the right side of my head is starting to poke out of my hair because it's gotten so thin.   Again, I am always looking at other women's wonderful thick hair - some are my age or even older - and I ask, why me??  This condition has turned me into a recluse since I'm too self conscious to go out any where but to work and the grocery store.  When I go to work I hot roll my hair so it looks thicker, add tons of hair fibers and hair spray to look presentable, but I'm still self conscious about it.  

If anyone is brave enough to try the JAK inhibitors I hope you are able to share a success story.  I had an allergic reaction to Finasteride so was unable to take it.  

I also have been doing the gluten, dairy and sugar free diet for 3 months.  Also ditched all chemicals in beauty products, shampoos and lotions.  I can't tell if there has been a difference in my hair since I still have visible disease, scarring and hair loss.  

Burnout and/or acceptance - please come find me.

Comment by Halfbakedwho on March 23, 2019 at 6:44am

Toby btw I didnt want to take Finasteride which was also prescribed for me - just too scary as are the Jak inhibitors. I do appreciate the information though and the research being done gives me hope that at least some people are trying to do something. 

Comment by Halfbakedwho on March 23, 2019 at 6:41am

Hello, I haven’t postednin a while because my keyboard stopped working on my iPad, and this annoynace plus the continued progression of the hair loss and my funky, spongey, sort of painful scalp pushed me into a mute introverted space of ... introversion, to be repetitive. 

I have been using Nasalcrom on my scalp. No difference. I continue the Clobestasol (ditto). I should be regularly taking Doxycycline but I forget to. Since January I have lost about a centimeter more in front, on top, where it’s nice and visible. The whole top is thinner and flatter. 

Sorry to suond so negative. I follow the FB page but dont like posting there for privacy reasons, yet they have a lot of good recent information. The spelling errors btw are from lack of real keyboard ad I said!

so there is where I got the idea of the Nasalcrom, and now they are talking about Jak inhibitors that suppress the immune system. Scary stuff imho. Side effects include cancer, but hey maybe you keep your hair.

 I havehowever half-heartedly begun an anti-inflammatory diet again.

i don’t expect it to do anything for my hair but if I feel better otherwise than it’s all good. Any linnks or ideas will be appreciated.

I wish headbands didnt look so odd on me...

good to be back writing to you, 

Comment by Dyners on March 22, 2019 at 1:20pm

Hi there! Just wondering what face treatments would anyone recommend as safe to use. My facial skin has become very uneven all over and little bumps at my temples. Not sure if just natural aging or FFA responsible. My beautician is suggesting a peel by DMK but sounds quite severe and pricey. She says definitely no scrubs?

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