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.
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It's now 11/21/12. I've had 3 courses of Retuxin, the last in Sept. '12. I feel no improvement which, I guess, is expected but no worsening in symptoms 2 months post treatment.
I saw Dr. Jeffery Ralph in San Francisco in 8/12 for a second opinion; an expert in peripheral neuropathy (never saw an expert previously) and he indicated that my biclonal gammopathy actually fell into the CIDP classification which confers lifelong free treatment with ivig from Medicare. So, Medicare should not have stopped my treatment previously. He indicated that ivig is the first line of treatment for my disease while Retuxin would be second.
I started the rEtuxin in 9/12 while I had the remnants of a cold. The cold then worsened and developed into a bronchitis which took 2 1/2 months to clear. Seeing Retuxin knocks down the immmune system, I feel that at the age of 82 it is dangerous to knock down the immune system (my Dad and brother both died from pneumonia) so I'm going to push for switching back to ivig at the beginning of the year. I initially decided on the Retuxin because the infusions would only be every 6 months while the ivig would be about monthly; not a smart decision in retrospect. Incidently , did you see the research study on the affect of ivig on Alzheimers, favorable affect on initial study.
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