Tuesday, July 14, 2015

lucky thirteen

I started a new drug today.

I'll have to add Actemra to this list as of today.

It's called Actemra and I have to visit the local ER every month to receive it as an infusion.

It's one of those crazy expensive drugs we hear about in the news; if I had to pay for it myself I'd be charging about $2,000 to my credit card each time, from what I see on the Internet. Instead, the province paid for the first dose and private health insurance will pay for the subsequent doses.

Actemra is intended for rheumatoid arthritis patients, but I don't have arthritis. I have relapsing polychondritis, and it has targeted my heart, causing inflammation serious enough that I experienced total heart failure in the very early morning hours of April 30, 2015. Happily, I was at the University of Alberta emergency room at the time.

None of the doctors at this prestigious teaching hospital had experienced a case of polychondritis like mine before. There are fewer than half a dozen cases in the medical literature so far.

What that means is that none of us know what will work to treat me. The Actemra is like a piece of spaghetti we'll throw at the wall: if it sticks, it's done. If not, we'll have to cook up something more.

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