Comment

Comment by ElleMN, USA on December 27, 2013 at 12:12pm

To Debs and anyone else using a dermaroller; just wondering how it's going? I'm checking them out on Amazon and wondering if it's worth the money. What I'm most interested in is improving the texture of the skin on my forehead where the hair has fallen out. Any comments would be helpful.

Comment by Debs on December 26, 2013 at 8:51am

Deleted emails by mistake.... Apologies to several ladies I just accidentally deleted some of your emails in my private email address.

Can u please resend if you have emailed in the last 24 hours

Comment by Celia on December 25, 2013 at 4:10pm

I wonder if Dr Harries' previous questionnaire results might become part of the research being spearheaded by Dr T ? I think Dr H's research may have had insufficient funding.  I have asked him for updates on my last 2 visits but no conclusive thoughts.

Kath - I am so sorry that your derm stopped seeing you after she thought the hydroxy wasn't working. The hydroxychloroquine does not work for me in that I still lose hair, still red etc.  I don't understand how you can be written off.

I am taking antibiotics. No effect. I know that one of our group recently posted that she was considered to be now free of FFA - I have not heard of this happening before - I hope that is still going strong.  Hope for some good news in 2014 !

Comment by Jodie UK on December 25, 2013 at 6:10am

Merry Christmas to all xxx

Comment by Kath UK on December 24, 2013 at 5:08pm

Merry Christmas to everyone. xx

Comment by Celia on December 23, 2013 at 5:22pm

Happy Christmas everyone ! XX

Comment by Kath UK on December 20, 2013 at 6:05pm

Celia - I guess I'm just getting on with my life!!  I haven't had a derm since September when she told me that the hydroxychloroquine hadn't worked for me and I might as well stop taking it.  She said that any other medication she had to offer would come with risks of side effects and weren't guaranteed to stop the FFA.. I told her I didn't want to risk drugs that could cause side effects. and she said that in that case she didn't need to see me again.

I guess I've just had to accept that for me the FFA will have to run its course.  It's bound to burn out some time!!

I use dermovate if my scalp gets irritated and I'm trying to be as fit and healthy as I can and get on with doing the things I enjoy.  The hairpieces are a great help in looking as good as I can.

How are things going for you with Dr Harries?  Are you OK with the hydroxy?  I think I rremember you saying you were considering taking an antibiotic and possibly an anti histamine too.  How's that going?

xxx.  

Comment by Polly UK on December 20, 2013 at 5:13pm

Kath - Dr T only mentioned a saliva sample so I'll just send that and see what happens. Thanks for your reply.
Celia, Jess, MJ - the new guidelines this year which I've seen mentioned on a number of sites say dosage should be based on ideal weight for height and not actual weight. If it's based on actual weight then my dose of 400mg is only slightly over but based on ideal weight for my height of 5ft 2in it should be 325mg. I'm going to try alternate days of 2 tablets and one tablet until I see my derm in January. I am becoming concerned especially as I also take 6 tablets daily for heart and BP!

Comment by MJ on December 20, 2013 at 4:22pm

My derm made it sound like it was my weight. I had been under a lot of stress and weighed under 110 lbs at the time of my appt. i am seeing another dermatologist on Jan 10 and will be asking alot of questions. I am so grateful to have found you all!

Comment by Kath UK on December 20, 2013 at 4:11pm

Polly -    I sent away my saliva sample today and I'd noticed when I read the literature that came with the kit that it mentioned blood and/or skin samples.  Dr Tziotzios never said anything to me about wanting blood or skin samples and only asked me if I'd be willing to send a saliva sample for DNA testing.  So I just figured that the literature that came with the test kit was what they sent to everyone who participated in any kind of test for the hospital  (There must be many other research projects being run at Guy's all the time, I reckoned).  Did Dr Tziotzios say anything to you about wanting blood or skin samples?

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