It’s hard to believe, but I’ve been getting Remicade infusions for seven years now. The anniversary falls next month, but when I have my next infusion, in June, I’ll be in my eighth year of treatments. As Sarah said — Sarah is one of the two nurses who have been at the HSS’s Infusion Therapy Unit longer than I’ve been a patient there — time flies when you’re having fun. Or, I thought to myself, when you have good health insurance.

The Remicade infusion protocol calls for infusions at eight-week intervals — roughly six per year. Each dose — each bag of mixed-to-order Remicade — costs about $10,000. If I were following the protocol, I’d have cost our health insurer $430,000 since 2004. (I believe that less money changes hands in practise, but the bill is still huge.) That’s a staggering amount of money — what does it buy?

A much better quality of life, to be sure. The medicine prevents the low-grade inflammation of arthritis, and it also calms the irritable bowel problem that has plagued me since my twenties. In short, it spares me the consequences of having an overactive auto-immune system. But it doesn’t actually prevent any auto-immune disorders. And by the time I started taking Remicade, it was already too late for the drug to halt the advance of ankylosing spondylitis. There was nothing to halt; the degenerative process of ossifying my spinal discs was complete.

So I have felt a moral incentive to reduce the number of infusions, and I’m happy to say that I’ve cut it down from six to four. It’s a bit of a stretch. If I had five infusions per year, I would never notice the gradual ebbing of the drug’s effect. At thirteen-week intervals, I do notice. From anywhere between two weeks to ten days before the next infusion, I begin to find that doing almost anything is more of an effort than it usually is. There’s no pain, but there’s no vigor. Once I accept the fact that I’m running low on Remicade, and not malingering, I can turn my time in what I call “the trough” to advantage: it’s a great time for reading and watching videos. 

I tell myself now that this is how life felt every day for about six years before Remicade came to the rescue. I can’t believe it.   

Drop me a line at rjk@dailyblague.com
This entry was posted on Tuesday, March 15th, 2011 at 6:00 pm.