I am so sorry to here about your dad .Tiffanie and I will be there ar the nih with you guys agian.seen you there .Becky lieffers <lieffers@...> wrote:...

Hello everyone, I hope everyone is doing OK. Michael just came back from our 2 year follow up, he did mostly well but there are a few things that surprised...

Karen, I had a question about Michael if you don't mind. You mentioned he had a DEXA scan at his last visit. Has he been on prednisone for his disease? I was...

Hi Jennifer, Thanks for your reply, no, he has managed to avoid significant lengths on steroids. That is one thing I have felt so lucky for since I have seen...

Hello everyone, It again has been awhile since I have replied, but do read all the e-mails. Zach again has had a rough month and we increased his steroid...

Hi Jan. Here is my thought on the anakinra and what we do in nursing. Before you empty your sterile anakinra syringe into the sterile vial, make sure you...

Michelle, Would you like me to send you the copy we have of the Childrens Inn Newsleter? Seth was so excited to see it! Last week, Seth had the opportunity to...

Karen, Thanks but that's ok. The Children's Inn sent us SEVERAL. Cool for Seth. I will be looking for Samson and Delilah here on the big screen. What fun!!...

Hi Jan,. Yes, Alex takes one am and one pm. He is on 4mg/kg.. ( 0.56ml am and 0.45ml pm). I draw up 7 syringes into one vial and use that until it's empty. I...

-Hi Jan, i have just seen your post dated the 5th of april, I am so sorry i havent been more consitant with my e-mails but from the minute i got home my life...

Jan, Hi. It was good to hear from you. I just thought I would comment about the Anakinra. I have been putting my Anakinra into sterile vials for over three ...

Thanks everyone for your concerns, thoughts and suggestions. Michele do you ever come up to St. Louis and go to the zoo, Grants Farm or any other place of...

Jan, I promise well get together. I think of you EVERY time I go to St. Louis!! ... Michele do you ever come up to St. Louis and go to the zoo, Grants Farm or...

Hi, my name is Candice, mum to Millie, almost 4 years old now. It has taken me a while to post to the group as it has, and still is taking a while to get my...

Welcome Candice and Millie, I am so glad you found us. I am also glad that you found Anakinra. I just got back from the NIH and I will let Karen (who is still...

thanks for the heads up michelle. I went back to work to make sure we could afford to pay for the anakinra if we no longer got it subsidised. and i had worried...

Dr. G told me that Amgen is currently NOT producing Anakinra. I am not saying they won't start again (this I don't know), but we are currently buying what...

can we help in the uk too ?? ive just forwarded this post to prof woo to see what she knows about it all.   Im more than happy to do fundraising and be very...

I just learned of a site that hosts online petitions, this could be a start? http://www.petitiononline.com/create_petition.html ... From: mmkcgriffin...

I think we need a straight answer. Is anakinra ending in the next 6 months? Someone needs to tell us. I sent an email to Dr. G. Hopefully Karen will know...

Hi Candice, welcome to the nomidsyndrome group, Hugs to Millie Regards Kate Barton _____ From: nomidsyndrome@yahoogroups.com...

Dear Candice, I am so glad that you posted to the group and that Millie is doing better with the Anakinra. I have been meaning to write to you for months now...

Hi Karen, Thank you to you and to everyone who has posted replies welcoming us to the group, you are all so kind. Also, thank you for your latest posting...

Karen   Prof Woo would like a few of these too if possible, I gave her one on our last visit could you send me 10 or so more and ill put them in the post to...

welcome candice and millie, we are also one of the "lucky" mild ones. tom has been on anakinra for 21/2 years, and at 14 is well and strong. I think he'll...

Hello everyone. Zach and I will be going to the NIH Oct 5th - 9th. Anyone else going at that time?...