Reply To: my rituxin experience
Lorri: After a lot of thought I decided to go ahead with Rituxan. The problem is that after five years of a loading dose of IVIg every fourth week the IVIg appears to be losing any ability to improve my condition; in fact, at best I am maintaining. Five separate EMG/NCVs show no demyelination; a nerve and muscle biopsy showed no inflammation. The doctors here on Long Island as well as at Mt. Sinai in NYC are a bit puzzled, although I have all the clinical markers for a diagnosis of CIDP. Dr. Latov, at Cornell Weill in NYC examined me and told me that there was no doubt it was CIDP: that half of his patients show no demyelination or inflammation in the testing process, but there is no doubt in his mind that CIDP is the only diagnosis. He said that atypical CIDP is the norm, not the exception.
At any rate, after a full round of testing I began Rituxan a month ago: 1000 mg a week for four weeks. I have the last of the four treatments this week. I had a bit of a reaction to the first treatment –rigors and a massive headache; after that just the usual monster headaches. Also — I itch all over all the time. I so seem to have more energy already; this is the first time I have not received IVIg in five years. In the past if I went even a couple of days past the 28 day interval the numbness would start to come right back, followed by all the other symptoms. We shall see if this works.
I hope that your are improving.