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Comment by Annie on August 22, 2013 at 10:51am

Hi all, Wanted you to know that I received my order of SmartBrow that Christiekd recommended and started using it this week. I haven't quite gotten the hang of it, but I love it. It's not like traditional eyebrow pencils that draw a line, but coats every little hair to make your eyebrows look fuller. Christiekd, you're right, it looks very natural. My only issue with it is that the brunette color runs a little dark. I have medium brown hair with golden brown highlights and have always used a light brown eyebrow pencil. SmartBrow is pricey ($29.95), so I called DermStore's customer service line to let them know that I felt like the brunette color was too dark. The customer service rep couldn't have been nicer. She offered to ship me the blonde color at no charge and I don't need to return the one I have. Is good customer service the greatest, or what??? Anyway, ladies, if you're in between colors like me, you may want to order the lighter shade.

Comment by Kathleen on August 22, 2013 at 7:53am

Hi everyone. I have been diagnosed with FFA and started losing my eyebrows about a year ago. Until recently my scalp itched horribly though I have not started losing scalp hair yet.About six months ago, I started on Plaquenil and that has helped. BUT HERE'S WHAT I WANT TO TELL YOU: three weeks ago I started taking a teaspoon of cod liver oil 2/x per day and the itching has finally gone away. I don't think it's a coincidence. I took the fish oil for arthritis pain but it has had this other welcome effect. My FFA does seem to be arrested though one never knows. Anyway, I thought some of you might want to try it. All the best! Kathleen

Comment by Debs on August 22, 2013 at 1:25am

Carol, wow what a fun thing to do... very plesed that you are carrying on life as normal and doing your extra work. It is so important that we don't allow FFA to rob us of anything more that our hair. Good for you. XXXXX

Comment by sammi on August 17, 2013 at 2:38pm

Sammiuk hi April I have used Nioxin shampoo and conditioner and noticed the difference. I have found it tk max! much cheaper than online been using it 6 months now.

Comment by Celia on August 17, 2013 at 1:39pm

April - that story is sooooooooo inspiring ! Thank you . X

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!

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