5 year old w/ Systemic JRA (new to this group)

[Guest guest]

Hello!

I'm a first timer to this site and am so excited to find another

source of invaluable information where parents are dealing with the

same thing I am!

My son Sam was diagnosed at age 1 with systemic JRA. We were VERY

fortunate to have a quick diagnosis. Within a few months he

developed pericarditis (inflammation around his heart); after a bone

marrow biopsy to rule out cancer, he was started on high doses of

sterroids and has been on them ever since (a much lower dose). He's

tried Enbrel and is now getting monthly remicade infusions; but

nothing is controlling the arthritis. He has it everywhere. It is

still very active and I find it difficult to wean him off the

sterroids. We are considering Kineret. Has anyone had success with

this drug? Experience any side effects?

If you're interested, you can read Sam's story in the Jul/Aug issue

of Arthritis Today magazine (there's a link to the article if you go

on the Arthritis Foundation website and search Sam Lincoln). He's

my little star! He's been through so much and I want so badly for

him to know pain-free days. Lately he hasn't been moving around

much without the assistance of his walker or tractor. He moans

during the night and I often have to get up to roll him over. It's

so unfair which is why I'm getting desperate to find something that

will work for him. However, I don't want to jump into anything. So

if anyone has any experience with Kineret (good or bad), I welcome

all feedback.

Thanks!