Friday, April 27, 2012

Remicade Round 2- dose 2

There are days when this Journey with JIA just plain SUCKS!  Yesterday in many ways, was one of those.  We have the most amazing Rheumatologist!  She really cares about my kids.  When we went for my little girls infusion yesterday, After talking to the Rheumy we added a drug called Solumedrol, it is an IV version of Prednisone.  We are trying to control her inflammation.  We are on her second round of loading doses for Remicade.  She is on a higher dose this time.  Im infuriated at the fact that it doesn't seem to be doing what it is supposed to.  I hear all the time  "Well, AT LEAST it is JUST ARTHRITIS" The world in general needs to come to a different understanding...  it is NOT just arthritis, It is an autoimmune disease.  It is an over active immune system that instead of the body dissolving those antibodies, decides to attack joints, sometimes, one or two sometimes more.  My little girl...  Ive lost count...  her toes, fingers, wrists, knees and ankles are ALL affected.  THEN...  we have another area affected...  her Jaw...  She has already had them injected, and the inflammation is back...  in less than 3 months she started showing inflammation after having her Temporal Mandibular Joint injected.  This is NOT fun to watch.  It is our reality.  Today I am not very optimistic.  Tomorrow is another day.  It will shed new light on a new day and hopefully another day closer to a cure.