Three steps forward, two steps back

Last week Mackenzie had a check up with our Rheumatologist here in town.  During the exam the doctor did notice active arthritis and swelling in her right knee.  It is very hard to sit and watch the exam and hear the doctor to tell you that yes, the arthritis is active again.  We’ve gone so many months with nothing but great reports and no signs of active arthritis.  Then this.  Like the heading says, three steps forward, two steps back.

On Monday Mackenzie began a round of Prednisolone that she will be taking for eleven days in hopes of not only giving her relief from the swelling and pain, but also to knock the arthritis back to an inactive state.  Remission cannot occur unless the arthritis remains inactive for a year without medication.  Obviously we are not as close as we once thought we were.

Today Mackenzie is feeling better, moving better, and sounding better.  Those of us that don’t have arthritis and don’t suffer with chronic pain will never understand what she feels but what I do know is that is heartbreaking to watch her withdraw from activities because she either hurts too much to participate or she is too fatigued from coping with the pain to participate.

We have been told numerous times that Mackenzie likely does not know what it feels like to not have some level of pain.  Because of her young age when she developed the arthritis, her only memories are of some type of constant pain.  Her threshold for pain is probably much higher then that of a healthy child or adult so when she shows signs of pain we react because the pain is probably getting to a level that would bring a health adult to their knees.  What amazes us is that she rarely ever complains.  If she is in pain we have to figure it out from her behavior because if you ask her if she is hurting she will likely tell you no.  A four year old child should not have to live like this.

Our next trip to U of M is coming up soon and at that visit the doctor will evaluate how Mackenzie is doing after a short burst of steroid treatment and will then make a decision as to whether to let her go with just her Enbrel or add back her Methotrexate.  Of course our hope is that the steroid was enough to get her arthritis back under control and that we will be able to just continue with Enbrel alone.  If not that means adding back to her routine a daily oral supplement, another weekly injection, and anti nausea meds as the Methotrexate makes her extremely sick to her stomach.  We never truly realized just how sick it made her until we stopped it and saw how much better she ate and how she started to finally gain weight.  For those that think arthritis is no big deal…..think again.  It’s a horrible disease with harsh treatments.