Back with another update.
My health continues to be stable. No new symptoms or relapses since late summer 2012. This lines up very well with my Rituxan treatment, which I began in late spring 2012. Feeling very positive about this drug.
I recently moved to Texas. My neurologist here is one of the more prominent MS researchers in the country. He supports me being on rituximab.
My neurologist in Los Angeles is also well-known among MS doctors-- the two of them know each other. The TX neuro was interested in my CA neuro's approach to rituximab-- giving it in five doses (every 6 months for 2 years), then ceasing treatment until blood tests show that the B cells have come back. Theoretically, they might never come back. This begins to look like a cure for MS. (For future damage at least-- rituximab does not repair damaged nerves, of course.) The rituximab tends to change the immune system in a permanent way, erasing this certain kind of B cell, so patients who have taken the 5 doses of rituximab are permanently "fixed" and don't have to be "on" disease-modifying drugs (though they are also permanently immunocompromised.)
My TX neuro had never heard of this approach before. He's also involved in the ocrelizumab trials. He thinks they're ridiculous-- says everyone in the trial obviously knows which drug they're on, because of the flu-like symptoms. But he's quite confident that ocrelizumab will be a game-changer. He noted that there's no way the pharma companies who own ocrelizumab will institute a treatment schedule like what my CA neurologist prescribes for rituximab-- the 5 doses then potentially never again. Not enough $ in that. But he sees the logic in it and we will proceed with that approach for my rituximab treatment.
The really good news for anyone on rituximab is that my TX neurologist feels there is no additional risk of developing antibodies if you switch from rituximab to ocrelizumab. That's probably what I'll have to do if I need another dose once ocrelizumab is on the market (I think he estimated late 2015?) The financial and legal incentives will be strong for neuros to prescribe ocrelizumab instead of rituximab. But the two are essentially chemically identical. The only important difference is the patents and how much $$$ pharma companies can expect to make off each one. And the pharma companies are in charge.
But it's hard for me to be too angry at them, because I am really honestly starting to believe that they have found us a drug that will stop MS for many people and slow it very significantly for many others-- Tysabri-like or better results with a far preferable risk profile. I'm very glad I'm on this drug.
My next infusion will be in a month or two. We're still figuring out how to get it paid for. Might have to get it done in a hospital. My TX neuro says insurance companies don't fight hospitals on billing quite as much as they do clinicians like him.