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Comment by Debs on October 12, 2013 at 3:48am

UK LADIES....

www.surveymonkey.com/s/KQSJTBY

If you type this it will bring up the survey.

This site is set up by Alopcia UK charity. Survey is to find out how much alopecia interfers with everyday life so they can inform the medical profession of the wider impact alopecia has on our lives... it is not just about hair loss... it effects work, hobbies, relationships, self esteem etc..

Comment by Debs on October 12, 2013 at 3:25am

I only use an organic shampoo from the brand Neal's Yard. I don't use any conditioner, hair dye or any styling products. I am basically just leaving my scalp alone. I have never had any redness, itching or pain thank goodness. My gut feeling is I need to let my scalp alone.. I am using plaqeunil - with limited success. Am hoping to get my derm to prescribe dyoxycline on next visit.

Comment by Jen on October 10, 2013 at 1:33pm

I usually do not get any itching or pain. I just get bald spots on the hairline. My derm does not understand that I have no indication he says that I am not paying close attention. He even said that he cannot do anything more other than injections which did not prevent the hair loss. I have noticed that the area where the hair fell out is extremely painful if I accidentally touch it with my nails. I have decided on my own to not use any topical steroids since the area is so tender. My thoughts are that the hair will fall out no matter what and I need the scalp to be in the best shape to secure a wig or what ever prosthesis I choose. I am not giving up on treatment but I think that the scalp should be preserved since it needs to be strong.

Any thoughts?
Jen.

Comment by Annie on October 10, 2013 at 12:26pm

I never had any itching or pain until I started putting stuff on my scalp. There are days when I consider forgetting treatment, letting the ffa run its' course, and buying a gorgeous wig (or two). My fighting spirit just won't let me give up until I'm out of options. And Brenda, I agree, it could be worse. It's just hard to remember some days.

Comment by Brenda, IL US on October 10, 2013 at 11:17am

PamW your comment on everything being dry cracked me up! So true! Annie i use Rogaine each night but i rarely use Clobetasol. It seems like it makes my scalp itch. I never had itching until i started all of the treatments. I can hide my hair loss pretty well except when the wind blows. My eyebrows are a different story. Oh well, it could be worse. :)

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.

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