Systemic/ Kineret

[Guest guest]

Hello Group,

It has been a long time since I've posted. We joined this wonderful

group almost 7 years ago when our son, (1 at the time) was

diagnosed with systemic JRA. He struggled for many years with

fever, rash, joint pain, elevated ESR, etc.....and the steroids,

NSAIDs and MTX really didn't touch his disease. At age 4, we

started on Kineret and experienced an incredible

remission.....Just what all of us pray for. Four years later,

(age 8) is doing wonderful. We did recently take him off the Kineret

for two days (he will sick with a GI bug)....To our

disappointment.....his rash came back FULL force. It appears that we

are truly just keeping his disease undercontrol with the Kineret. I

noticed that a few members are having a hard time with insurance...I

am sorry because I know how expensive these medications can be. We

have been fortunate....in that, our doctor filled out a form making

is clear that had failed all other approved therapies (MTX &

Enbrel). If anyone would like to contact me, please email me

directly at mwestfall " at " austin.rr.com. I don't check the list

daily and may miss your message otherwise.

Hugs and Prayers to All,

Marguerite and (systemic 8....diagonosed @ one year of age)