I've had contact with several patients and doctors involved in Rituxan for PPMS trials.
On the patient's side, some of them have reported that the drug stopped the progression of their disease. Others reported no effect, but they may have been in the placebo control group of the trial. I have not seen any patient reports of recovery from disability. Rather, the best I've heard reported is that their disease stabilized.
The doctors I've talked to have been, I hate to say, less than enthusiastic in their responses. Dr. Peter Calabresi, at Johns Hopkins, told me that at best he'd seen stability in some of his Rituxan treated patients. I've heard the same from a neurologist who is working up in Boston. I've hounded my own neurologist, here in New York about getting me on to Rituxan, and he told me flat out that he has not seen it be effective on any of his progressive patients. This after we spent several months last year trying to get the insurance company to okay my getting the drug (they refused). He now has me on CellCept, which I believe we're going to do in conjunction with intrathecal methotrexate.
Despite my neurologists negativity, Rituxan is the only drug I've heard of that has even brought about stability in PPMS patients. At this point in my disease, stability would be a godsend. Things are going downhill rather fast, and if I could just freeze things in place where they are now I'd be more than happy.
If the upcoming trial results are positive, I will definitely demand to be put on the drug. I've very little confidence that the CellCept methotrexate combination will be very effective, and doing nothing is not an option. If I take Rituxan and see no benefit, at least I'll have gone down swinging...