Suzanne,
Have you already become aquainted with this org?
Here is the link:
http://ww2.arthritis.org/communities/juvenile_arthritis/abou t_ajao.asp
We are new with the JRA stuff but I belong to a board that is for parents with kids with JRA and it seems that some of the kids go off the other meds and make a go of it with only Enbrel and do ok. levlarry - Yes, and the AF parents board is GREAT, too, but it tends to die when school is out. It is from following that board that I have come to notice the "good times" don't always last; however, I do take into account that people tend not to post when things are going well and the parents there probably have more difficult cases to begin with. That is why I try to pay attention to studies, too. But my daughter also qualifies as a difficult case, so I feel like she will have similar experiences. grammaskittles - Thanks for the info on the other board. I m-i-g-h-t check it out - I'm wishing I had stayed away from here! It's a great board, but I'm spending too much time on the computer now!!!! This is a very nice board, though - my compliments to everyone. Our ped rheum absolutely loves Enbrel. He is willing to do Enbrel or Humira, whichever we decide, but it is very clear he prefers Enbrel. Very clear. Very very clear. Her "stable" xrays have bought me a little more time to not make that decision yet. Glad she is stable and the joint erosion is slowing down. I read somewhere (can't remember where dang it) that Enbrel is preferred for the JRA kids because it seems to work better for them. Most of the kids on a biologic over on my parents board are on Enbrel. There is one on kineret. Sorry it took me so long to reply. I was down and out with a virus. Feel free to PM me if you have any questions at all. Yeah, the boards become so addicting sometimes. I think it is because we are all in the same boat and it just feels really good to be around people (so to speak) that can truly understand what we feel and what we are going thru. My impression is that they all start on Enbrel, because it is the only one approved by the FDA for children. Insurance balks at anything else - some parents have insurance problems even after failing Enbrel, but from what I can tell, they all eventually get approved for the next step, it is just a hassle.On the AF board, there are some who have been through them all, even have failed Remicade. It may sound "backwards", but that is why I don't want to start! She's four and feeling great - what if we start biologics and blow through them all, then what? I know children get relief from Enbrel, but she doesn't need anything to get through the day at all right now. She only takes Zithromax, 1 tsp. twice a week. That is all - no NSAIDS, no DMARD, no pred. I feel like we need to save the big guns for when we need them, but the ped rheum says we need them now. He just isn't very successful at explaining to me why we need them now! Possible future damage is all I get....not worth the risk to me, not yet, especially w/stable xrays. I told him I just thought I would know when it was time. He scoffed at me, audibly scoffed. I called him on it - told him not to scoff at me - and reminded him that I was the one taking her all over to different drs. and being told nothing was wrong with her over and over again, while she was getting permanent damage. It wasn't until she was in terrible pain (and by that point I honestly thought she could die) that someone listened to me. Copyright ArthritisInsight.com |