I was first diagnosed with rheumatoid arthritis seven years ago. Since then, I’ve been on a string of medications to bring it under control, each one newer and more expensive than the last, each with its own list of scary potential side effects. We joke about it at home: “Honey, can you get me my liver cancer shot?” or “Oh darn, I’m almost out of the sudden gastric bleeding pill.” The worst drug was the steroid prednisone, whose slogan should be “Makes you fat and cranky at the same time!….Now with less sleep than ever!” I was on that, on and off, for about 18 months. I gained 40 pounds.

For the last three plus years, I’ve been on a biologic drug called Rituxan, developed by Genentech, which brought in more than $2.2 billion in 2008. It costs about $11,000 for each set of infusions, or about $22,000 per  year for most patients, who have a set of two infusions every six months. I, being special, needed it a bit more often. But over the last several infusions, I’ve heard talk of a new potential side effect, a brain destroying viral disease called progressive multifocal leukoencephalopathy (PML). It’s always fatal but  rare. Although I was going on a four and a half or five month infusion schedule, my rheumatologist said he was comfortable letting me continue.

Over the years, I’ve become close with my nurse practitioner at the office. We take walks together, compare parenting notes. She’s a great sounding board and always willing to take an evening call at home — about health matters or husbands or gardening or the healing power of good dark chocolate.

I’m one of her harder cases, one of just a handful of people in the practice — and this rheumatologist is an oft-published world-leader in his field — whose disease has never been under control. I was doing pretty well with rituximab. Not perfect, but I had more good hours and more good days. So it was a surprise when S. called me one evening and said that despite what the good doctor said and the rarity of this particular side effect — just four RA patients thus far (and others who were on the drug as a cancer treatment, which was its first incarnation), all with other underlying issues —  she wanted me off this drug. “Friends don’t let friends get PML,” she said. Those exact words.

I had to wait several weeks to get approval for another biologic drug, Simponi (heart failure, liver failure, multiple sclerosis), a fully humanized version of Remicade, another monoclonal antibody anti-TNF agent. It costs about the same as all of the other biologic drugs (Enbrel, Humira, Remicade, etc.) — $20,000-25,000 per year — but my insurer has only approved me for use of this monthly injection through spring.* S. thinks it will work well for me, and I’m hopeful. And grateful that I have someone on my side, who will consider my case during off hours and wonder what drug, what trial, might be the answer my immune system is waiting for.

Thanks, S.

*As an aside, anyone who is worried about government getting between patients and their physicians should know that a corporate bureaucracy already stands between my health and my health care — and it’s one that is concerned with profits, not my well-being.