first infusion (RRMS)

A board to discuss the anticipated multiple sclerosis treatment Rituxan.
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Re: first infusion (RRMS)

Post by yammerschooner » Sun Apr 13, 2014 3:15 pm

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.

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Joined: Thu May 03, 2012 12:11 pm

Re: first infusion (RRMS)

Post by yammerschooner » Tue Feb 23, 2016 4:51 pm

Back again, two years later.

I'm still convinced Rituxan is a great medicine. It has arrested my MS progression for almost four consecutive years. This after I was in a free-fall in early 2012.

I did have one minor relapse last year, but the details make an even stronger argument for the efficacy of Rituxan. When I began taking Rituxan in mid-2012, my neuro suggested I take five doses (two years of treatment), then switch to an ad hoc system where I regularly get blood tests and only take Rituxan if I see my B cells start to come back. I was treated twice in 2012, twice in 2013, once in mid-2014, then switched to watchful waiting. My B cell count stayed low in my late 2014 blood test. I was tested again in March 2015. I had to travel in April. Unfortunately, the lab messed up the order and failed to test my B cells. My neuro office didn't notice the omission, accepted the results (of a Vitamin D level-only test) and did not notify me. I traveled as planned. Midway through April, I developed a new MS symptom (an electrical sensation shooting down my left thigh). I called my doctor, told him about it, and found out that I did not have an up-to-date B cell count. I went and got my blood tested. Indeed, my B cells had started to reappear. I flew home and got a Rituxan infusion. Within weeks, the new symptom had begun to go away. It's gone now. I might have sustained some permanent damage from that episode, I don't know-- nothing very bad. But the shooting electrical signal is a thing of the past.

Since then, we've decided to stick with an every-six-months infusion, basically forever, keeping my B cell count at zero proactively. If my insurance requires it, I'll switch to ocrelizumab when it's available at the end of this year. Personally, I'd prefer to stick to Rituxan.

I've continued to tolerate the infusions. I did get an itchy throat the last couple of times, a feeling of an allergic reaction and fear that my throat might swell. We slowed the drip and I did fine. (It was worst for the infusion that was almost a year after my previous infusion.)

As for infections: I'm 33, in good physical shape other than MS, regular exercise, healthy diet, all that. I don't get sick too often. I did need to take antibiotics for respiratory infections in summer 2014 and summer 2015. Kind of odd I needed it in the summer both years and not the winter. Maybe I was being overly careful because I know my immune system is at least somewhat compromised. Both times I recovered easily with antibiotics. No other concerns regarding opportunistic infections.

I highly recommend switching to rituxan or taking ocrelizumab when it becomes available. It's a game changing drug. The trials and research bear this out.

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