Our doctor wasn't as excited as I was. Pleased yes, but seemed cautious. I am glad for this. I appreciate her conservative approach. Our first wean started last month. The wean off was her. Instead of every 4 weeks, we are not checking in every six weeks. Our new taper is the small amount of steroid we are on. We are going to rock that between 1/2 ml and 1 ml for the next six weeks. In two weeks we have IVIG and lab checks. She will also be checking T-Cells. If they are back, we will run Rituxan again. I felt like her head was full yesterday. She seemed distracted and very busy. She always expresses her confidence in me. How they trust me and how in tune I am with him. I appreciate that, but there is an immense fear.
So here we go with continuing the great taper. We tried this taper last year. It didn't last long. Do things feel different this time. I am not sure. I think they do. With methotrexate, cellcept, tacrolimus, enbrel, ivig, and rituxan and plaquenal on our side, just maybe.
|Protected from JDM. I make him wear this everywhere. Protects him from injury and germs. Just kidding.|