frustrated

[Guest guest]

Happy Friday everyone,

I guess I'm looking for some encouragement today. is finishing her 2nd

week of school so far this year - just started 4th grade. Things are okay, but

not great. I hate that she is struggling with JIA. As parents I guess Greg and

I are in the frustration/anger stage of this systemic JIA diagnosis. It's been

only 10 months I know, but it's hitting us that this is chronic now, that it

will stay with for God knows how many years, maybe forever. She's been on

max dose methotrexate for almost 4 months - the last three weeks injectible.

She's still on the 5mg pred with no current plan to reduce. We switched to

Mobic (from Ibuprofen) and while it's great to dose only 1x per day instead of

3-4 I'm thiking the Mobic isn't working as well. We've seen breakthrough low

grade fevers, a slight rash again, and definitely joint pain and swelling. We

have labs on Monday - the first time we've gone a full 4 weeks between draws -

much better than when it was 2x per week! Maybe it's that sinking feeling a few

days before blood draws that's bumming me out today. There are always more

decisions, more medications to add, and I know I should be thankful that we have

choices, options. Usually our Rheumy would try Enbrel next but of course recent

research on Kineret shows it is very effective with systemic. Has anyone here

found relief from systemic on Enbrel? We are wondering if we should try it

before the Kineret, or just make the jump to the daily shot with a medication

that might have a better chance at being effective. I apologize if I sound weak

and wimpy today - just looking for some encouragement from those who know what

this is like. It's hard to put on the bus with a low grade fever and

joint aches, with all the other kiddos (including my 5 year old) bouncing around

and not having to deal with what lives with daily.

nn

mom to , age 9, SO-JIA, diagnosed Nov 09