Ocrevus—My Latest Attempt to Stem the Tide

Ocrevus probably won’t work for me. It's best suited for younger patients with less disability, and it's more effective for people with active lesions, which I don’t have.

But I’ve got nothing else to try.

And, if it does work, even a little, wouldn't that be a wonderful thing?

Ocrevus is the first drug to gain FDA approval in the United States for the treatment of primary progressive multiple sclerosis, my variety of MS. Its predecessor, Rituxan, has been used off label for years with some anecdotal evidence of success. In 2005 through 2009 I participated in a clinical trial for Rituxan, and I used it off-label afterward until my insurance company refused to pay for more. I experienced some reduction in the speed of disease progression. But I was younger, and I had less disability, so I don’t expect to pick up where I left off.

There’s a bit of controversy surrounding this drug. Some people speculate that if the patent had not run out on Rituxan, the pharmaceutical company, Genentech, would have run another trial of that drug years ago, and it might have been available sooner and at a lower price than Ocrevus. Company officials counter that the differences between Rituxan and Ocrevus are the reason why one drug failed a clinical trial and the other passed.

If you want to get into the details of this argument, I recommend reading this article from my friend the Wheelchair Kamikaze.

I had my first 300 mg IV infusion of Ocrevus on July 19, and my second 300 mg infusion today, two weeks later. I was at the clinic for about five and a half hours each time. Every six months, for an indefinite period, I will receive a single 600 mg infusion. The side effects are minimal.  The nurse had to stop my first infusion for about 20 minutes when I started getting itchiness around my head. The second infusion had no incidences. The drug is not without risks, but given my level of disability, I scoff at its risk profile.

The cost? I will be responsible only for a co-pay and possible deductible, but my insurance company will be on the hook for about $65,000 a year.

When will I know if it's helping?  Ask me this time next year. It takes that long to notice changes in my disease progression.

Ocrevus probably won’t work for me, but I'm a desperate man.  I'll be carrying my 99 pounds of skepticism and 1 pound of hope with me to every infusion. Well, actually, Kim will carry a large share of the load. It's too much for me alone.