JRA Update

I think my van can drive the route to UIHC from our house by heart...I don't even need to steer anymore :). We've visited UIHC 6 times this summer as we're trying to manage Will's JRA. A little background...As I understand it, the first line of defense medication is Hydroxychloroquine. Will was on this from when he was diagnosed until March 2008. In combination with the Corticosteriod injections he received, Plaquenil worked very well to control the inflammation in his knees. He was weaned from that drug in March 2008 and was asymptomatic from then until January 2009. His swollen knee (this time only the right) returned so we tried another injection in March 2009. It didn't work and as Dr. Ferguson (Will's rheumetologist) was weighing the options, a routine eye exam showed trouble with Will's left eye. JRA can cause eye inflammation, that left untreated, can cause blindness. I'm so thankful that Dr. Ferguson advised me from the first time she saw him to have his eyes checked in the Pediatric Opthalmalogy dept at UIHC. They are experts and they KNOW what they're looking for. So we added steriod eye drops every two hours to our medication list along with Methotrexate and Folic Acid (aids in the how the body metabolizes Methotrexate). Fast forward to Tuesday Aug 18th. NO MORE EYE DROPS! There was no evidence of inflammation in Will's eye! We'll continue to see Dr. Longmuir 4 times a year for continued monitoring. Another positive is that his vision in great...just shy of 20/20. On the other hand, it's been 13 weeks on the Methotrexate/Folic combination with no reduction in swelling or inflammation in the right knee or either ankles (both are now involved). At our most recent visit with Dr. Ferguson (also the 18th...talk about a long day!), she upped his Methotrexate dose and has added Hydroxychloroquine back to his regime. Thankfully, he's doing wonderfully taking pills, so we no longer have to compound it, so no more ICKY taste! His labs have also been great, showing he's tolerating the Methotrexate well. It's a chemo drug - obviously given in much lower doses to JRA patients, but there are still some scary side effects that we need to monitor with labs every 2 weeks. We go back in early November and we're praying that the Methotrexate/Hydroxy.../Folic combination works. Our next step in Will's treatment isn't one I'm quite ready for. The next step is biologic agents - namely Enbrel - a TNF protein blocker. It's approved by the FDA for use in adults and children, but just received a "black box" warning for children. Dr. Ferguson is doing more research and we will discuss more at Will's November appointment, if this is the treatment she suggests.

I'm so grateful for Will's doctors. They don't talk down to me. They treat me as an equal in the care of my son. They are caring and kind and Will enjoys them too. We are blessed to be so near a world class facility. I have to keep reminding myself of this as I struggle with decisions to be made.