I stopped the IVIG in June 2010, first because Medicare was going to stop coverage in several months, undoubtedly due to the excessive cost. Secondly I was not sure it was doing anything anymore. We decided to make another attempt at Retuximab in the fall, the intervening time to be spent obtaining a new baseline. It became apparent about a month out that the numbness was increasing slightly, particularly in the fingers and after 3 months going from a 2 to a 4 in the left hand and a 0-1 to a 2 on the right. Balance seemed a little worse with two falls during the summer months (first falls).
In September we started the first of 4 weekly infusions of Retuximab, finishing on 10/22/10. With the second infusion I had a reaction, shaking chills and a low grade fever. A CBC showed a pancytopenia. I was loaded up with antihistamines for the last two infusions and had no further reactions or abnormal blood results.
A month or so out we will check markers, IgM, AMAG and B cell count most likely. My symptoms are stable and did not change with the infusions. My hope is that symptoms will remain stable.