Not what we wanted to hear...
Monday, January 28, 2013
So, Friday was eventful! It was a white-knuckle drive to Indy in the ice. Luckily, the roads were clear on the way home.
I probably would have decided to reschedule if S had been in better shape, but he’s really been struggling lately with flares and pain.
We spent a long time with the doctor on Friday – she sat and talked to us during most of his infusion. What it boils down to is, the Orencia is not working. We knew this, but it was still hard to have confirmed. We had such high hopes that this would be what turned him around.
The way the doctor explained it, of all the kids diagnosed with JIA, 50% of them improve on methotrexate alone. S didn’t. Of all the kids who don’t, biologics are started, and 70% of those kids have improvement. S didn’t. Of the kids that don’t improve with those, TNF inhibitors are started, and 80% of those kids have improvement. S didn’t.
We’re getting up to the top of the pyramid with a very small percentage of kids. She gave us two options to try. Actemra which is another infusion, but would attempt to treat this as systemic arthritis (vs. idiopathic). This has some merit because he has had pericarditis, which shows that he does have some systemic factors. Luckily, his eyes have not yet been affected, although we do have to bump up his eye doctor visits to every 3 months. Our other option, and this is the one the doctor really wanted us to try is Rituxan, which would shut down his immune system and wipe out all of his antibodies. This is the one she referred to as the “big gun.” The hope would be that his immune system would reset itself, and stop attacking his tissue. However, this one scares us – it’s got major side effects and since his immune system would be shut down, even the smallest infection could be very serious. We decided this was not the time of year to try that.
So, we decided to try the Actemra for 6 to 8 months and if he’s not improving by July or August, we’ll try the Rituxan then.
I hope this is the one, and I hope I don't have to fight my insurance company for 6 weeks like i did when he started the Orencia.