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Comment by Celia on August 17, 2013 at 1:38pm

Hello all - I know that you don't log on daily but it would be REALLY helpful if we all knew your location - I'm UK. I hope you all don't mind if each time we all log on - we ask folk to go into their profile and say UK US whatever - for me now there are so many of us - it helps to identify and remember in a way - I hope that's OK. Many of us did that a short while ago but there are many new people now. Thanks so much X

Comment by April on August 16, 2013 at 8:44pm

Terry, I'm sorry you are so down. I think we all here can relate. I just spent some time with my best friend's sister who has alopecia Universalis since the age of 19, almost 30 years. She has lived with not one speck of body hair. She wears wigs and makeup, but I NEVER knew she had it, I've known her for 20 years. She is one of the most beautiful women I know. She has found a loving relationship, hair loss and all. She helped me to try and put some of this in perspective. You must remember that you are a beautiful person, inside and out! I know this is hard. Try to gain strength knowing it could be so much worse. My sister has Parkinson's disease since the age if 25. She has been through hell with her disease. She gives me strength everyday. Hang in there, and feel free to vent any time:)

Comment by Alice on August 16, 2013 at 1:32pm

Jules, what Dr Harries said makes sense to me. I think a lot of us have had considerable hairloss on the sides with no visible sign of inflammation and many signs of inflammation on top without much hairloss. I've never understood that. I also don't understand the connection between autoimmune and inflammation. Can one have the former without the latter?

Comment by Jules UK on August 16, 2013 at 4:42am

Oh, also ( sorry to go on..) the steering group meeting planned in early August was cancelled and has yet to be re-arranged.
Dr Harries mentioned at last appt that he now believed that inflammation didn't necessarily mean hairloss would follow. He has patients with inflammation and no hairloss, and vice versa. As he put it, he's stopping following the inflammation.
Have a good weekend everyone! X

Comment by Jules UK on August 16, 2013 at 4:39am

I've been using DGJ Organics hair products (from Waitrose) and find them very gentle and not drying. My hairdresser says my hair is in excellent condition (perversely). But I tried a sample of a salt volumising shampoo from Lush and it's lovely! Strange at first because of the salt crystals, but I will certainly buy some.
I've also been using Regaine foam (5%) for 5 weeks now. I'm losing a lot of hair but believe this is a positive thing at this stage in the treatment. It's hard to tell how much actually reaches the scalp. Any tips as to how to apply? I try parting the hair and rubbing it in.
Downside is that it means confronting my thinning hair twice daily when my way of coping has been to ignore it. But the problem is becoming more visible now, sadly! Still hoping the Plaquenil will kick in soon. 5 months and counting!

Comment by Brenda, IL US on August 15, 2013 at 9:27pm

Jules- thanks for the encouraging words. If the injections aren't helping i'm going to ask my dermatologist if i should stop them. Last year i used womens minoxidil for 4 months and I should have kept it up. I tried Nioxin last year and it caused a rash on my face and scalp. I use Free & Clear shampoo and conditioner. Very mild.

Comment by PamW San Diego, CA, USA on August 15, 2013 at 7:57pm

my hair dresser gave me the entire system - shampoo, conditioner, and leave in treatment as a gift. I have used it for approximately three weeks and find it to be very drying. My hair used to have a silky texture and it is now quite dry and frizzy, which I think is due in part to the nioxin. As far as tea tree oil, I purchased the Paul Mitchell tea tree shampoo and conditioner and also find it to be drying. I only use the conditioner now (when I have very itchy days) and then recondition with a more mild product. Also, at my last doctor's appt, she told me that I was over using clobetasol and that I may only used it one time a day, Tues. Thurs., Sat. she wanted my scalp to have a "rest".

I want to pass on some advice a doctor gave me when I told her that I felt terrible about myself. She said that I needed to be kind to myself, and to treat myself and to talk to myself as if I were my daughter or friend. I would tell them kind things and be reassuring and that is the dialogue we need to have with ourselves. I am trying, but I confess I am still go into panic mode.

Comment by April on August 15, 2013 at 7:13pm

Hi everyone! Pam, congrats on your new wig: ) I have a question for all of you, have any of you tried Nioxin shampoo/conditioner? My nurse who does my xtrac treatments recommended it to me, he said it helps promote a healthy scalp. I looked it up online and it is a bit expensive and contains a lot of chemicals, sulfates, parabens, etc. Things I generally stay away from. Just wondering if anyone has tried it and if it is worth it. It seems the main ingredient in Nioxin is peppermint oil. Would tea tree oil have the same effect? Thanks!!

Comment by Kath UK on August 15, 2013 at 6:57pm

Pam - I'm delighted that you feel your new hair is a success. Enjoy! I'm sure you look fabulous.
Liz - I'm with you about telling people and I've found all my friends and family are supportive and interested in my hair pieces. Of course I still wish I didn't have FFA but I refuse to let it dominate my life. I love my new look and the confidence it's giving me and I'm so happy you are feeling positive and upbeat about your new hair. Good on you!

Comment by Liz on August 15, 2013 at 6:12pm

I tell all my friends about my hairloss and that way, in a way, they are going through this with me. People can't be supportive if they don't know what's going on. My friends and family have tried my wig on and it's quite a feature in my home, even when I'm not wearing it!
If somebody doesn't understand about hairloss that's 'thier' problem and not ours...Embrace life and wigs! I have better hair with my wig than I ever did with my own hair :o) xx

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