August – Another GVHD

 Here is what was going on end of August 2012.

I hope you’ve read the July update post about “super muscle” GVHD.  It went away within 24 hrs. and thanks to steroid (prednisone), Jason had so much energy that he even started to run again.  He was feeling really good again, and tapering down of the steroid went really quick and well.

He had great couple of weeks, and (of course) GVHD came back.  This time, both arms and legs were swollen, his liver function level was down and white blood cell (not leukemia cell) count was up.  Doctors put him back on steroid again, hoping he would react the same way (quickly) as the previous GVHD, but it didn’t. Redness and the pain increased, and it seemed like it was going to the neck and also his range of upper body movement was getting bad.  They increased the steroid dosage and added immunosuppression medication (tacrolimus).  Because of immunosuppression med, he had to get back on two kids of antibiotics, high blood pressure med and restriction on activities and foods, etc. 

It took a few weeks to get back normal size arms and blood levels this time.  But what bothered him the most was restrictions on activities.  He had to stop running.  He was enjoying running, feeling good, and was excited to go back to work soon. 

Jason started to taper down the steroid much slower this time.  It will be a few months or more until he will be done with steroid.   Doctors are monitoring Jason closely this time, and we are back to see doctors every week... 

Love,

Mayumi