Friday, March 09, 2012

JRA Update

Our journey with JRA starter here we've had so much progress. Lucy hit remission and then it came back with a vengeance. Yesterday we went to see Dr. Spencer. I was hoping that we could stay off Enbrel and switch to a different less dangerous drug. No such luck. When we started JRA was in two joints. It is now present in both wrists, fingers, toes, both ankles, and both elbows. Her big toes aren't straight and she couldn't fully straighten her elbows.

It is hitting me so much harder this time around. At the beginning I just had this hope that everything was going to be fine. She was going to grow out of this and it was just going to be one of those things. When it comes to down syndrome she has always been one the right side of the odds. She has had no heart, bowel, or ear problems. I "felt" that JRA would work the same way.

Dr. Spencer put her back on a full dose of Enbrel and Naproxen. He told me I could discuss it with Kevin and talk about if we really wanted to do Enbrel or not but we just don't feel like we have a choice. So far it's the only thing that has worked for her and I just can't risk the permanent joint damage. I hate it's potential side effects and the fact that it really lowers her immune system, but she is pain free.

I started this post last week...Today I'm taking the advise of my husband and focusing on today not what could happen in the future. Today I'm thankful for this medicine.

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