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Comment by Annie on October 10, 2013 at 11:01am

The news just gets better & better with this awful disease. Not only are we losing hair, the new growth is getting finer. I tried a thermal protecting product by John Freida for frizzy hair yesterday, which helped. It made my hair glossy & more manageable. The only problem is that my hair is a fine to medium texture, so it weighed it down a bit. Anyway, I actually got TWO compliments on my hair yesterday. I haven't told anyone (not even my grown kids) besides my husband, hairdresser, & eye doctor about my ffa yet because I honestly can't stand the thought of people watching my hairline for changes. Every time I get a compliment (which happens less & less these days), I smile & remind myself that I worry way too much about my hair.

Comment by ElleMN, USA on October 10, 2013 at 10:18am

I'm with you in that theory Pam. A while back I thnk it was you who mentioned toxic lipids in the sebaceous glands and I started thinking about all the toxic petroleum in the lotions I've used for years. This summer I stopped using all moisturizer on my dry skin to see if I could jump start my sebaceous glands into producing more oil. I thought how have people lived for thousands of years without Lubriderm and Lancôme? I'll see what's happens this winter but so far I'm not super dry or itchy. I also dropped the medicated shampoos and my scalp is way less itchy; still flaky though. Just shea butter-based shampoo and conditioner. And I use Shea butter and jojoba oil on my skin if I really need something. I'll keep you posted if any hair starts growing!

Comment by PamW San Diego, CA, USA on October 9, 2013 at 6:59pm

I have a theory. Our sebaceous glands are what is being attacked. There is oil in the gland. Our hair follicle scars and the hair falls out because the gland scars over to protect itself from the attack. No sebaceous gland - no oil. Dry skin, dry hair, and thanks to menopause dry you know what.

Comment by Liz on October 9, 2013 at 5:04pm

Hi Annie
A lot of the hair on my head has changed. My hairdresser tells me that my hair is growing through in the same way as someone who has had chemotherapy. It's fine and whispy. The bits around the fringe area look like they've got electricity running through them. The rest has gone wavy and is also lighter in colour. The hair on my arms has mostly disappeared and the odd hair that's left is short and grows in a zig-zag fashion. I don't use any products on my scalp xx

Comment by Annie on October 9, 2013 at 4:06pm

Brenda, thanks for letting me know I'm not alone. I know what you mean about not knowing whether to laugh or cry. I always thought my hair was my best feature, and now I don't even recognize it. I sometimes think life will be easier if/when the time comes for a wig -- no more bad hair days. I'm trying to be thankful for now that I'm able to hide my hair loss for the most part with the help of a good hairdresser. Still, it would be nice to have a good hair day every now & then. I wonder if the flyaways are caused by the products we're using on our scalp. I use Rogaine and Clobetasol, which are both alcohol-based and very drying. The weird thing is that no amount of conditioner seems to help.

Comment by Brenda, IL US on October 9, 2013 at 12:46pm

Annie i have the same problem with my hair sticking to my face. The texture has changed so much. It's a lot worse when i apply sunscreen or moisturizer. The hairs in my eyebrows that i grew from the steroid injections go every which way. The dents above the brow line are very deep. I have to laugh though, because i don't want to cry.

Comment by Annie on October 8, 2013 at 5:21pm

Does anyone else have problems with static electricity. I've always had slick, straight hair, but now I have hairs flying around and tickling the sides of my face constantly. It drives me absolutely crazy! Also, all the short new hairs I've grown with Rogaine are standing straight up. It's not just the areas affected by ffa that are electric, it's my entire head. If anyone else has this problem, could you please share how you control those annoying flyaway hairs?

Comment by Celia on October 8, 2013 at 11:12am

Jules - not a problem. See you all tomorrow ! x

Comment by Annie on October 8, 2013 at 10:51am

Ladies, thank you so much for your encouragment. I've remained positive since my diagnosis almost 7 months ago, but I wasn't prepared for a flare-up two months after starting Plaquenil. I'm hoping my derm will see enough improvement at my appointment next week to keep me on Plaquenil until I hit the 6 month mark. I think I'll also ask him about an antibiotic. He's always felt like I didn't need one because there's no inflammation & very little redness on the surface, but I know others have had good results taking both.

Rebecca Germany, You questioned taking Plaquenil & antibiotics at the same time. christiekd has had good results using both. I think her doctor prescribed something other than Doxycycline, however. You can read her post on page 30. I go back & reread it every time I feel overwhelmed & helpless. It helps me remember that some of us are managing this awful disease.

Comment by Debs on October 8, 2013 at 9:26am

Rebecca you can take plaquenil and doxycycline at the same time, I have a blood test once every 3/4 months with the plaquenil to check liver and kidney function. The last time I saw my derm the FFA was still active and I had been using plaquenil for 3 months, I see him again in November as he wanted to give it more time.... the FFA is still active but it is slower than before... He has said next visit he might also give me doxycycline and has mentioned the steriod injections but I am worried about injections because of the dents they can cause... Your treatment plan is definately the same as we are being given in the UK so it seems that all of our derms are using the same drugs and protocols. Best of luck Rebecca with your new treatment. XXX

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