Friday, March 28, 2014

Damned if you do, damned if you don't.

Stupid steroids...I woke up at 1:30 this morning, high as a kite, and found myself at 2 am dancing in my kitchen to Brittany Spears and eating pumpkin pie. With a steroid migraine. Two migraine medicines, a gallon of tea and an anti-nausea drug later, I feel...well, like crap. And, of course, I've volunteered to be a mock-earthquake-victim for the State of Alaska for the next two days. Fun times.

And that's the thing with lupus drugs. If you don't take them you feel like crap and could die. If you do take them you feel like crap and, unfortunately, have no absolute guarantee that you won't die anyway. Medications decrease the chance of lupus-related death, but they do not eliminate it entirely. So every day a lupus patient has the choice: should I take these pills, which may keep me alive but will make me feel like crap, or should I just give up, get sicker, and feel like crap anyway? Always remember, of course, that if you do take the pills and they don't help you, your doctor is likely to label you as crazy-pants and tell you that you're just stressed out. Here we 'round the merry go-round, where it stops, nobody knows.

So far I've chosen to take the pills/infusions/shots. But I no longer judge those who do not make the same choice.


  1. There is of course as we well know a subset of lupus patients for whom steroids don't work. I was surprised to find out it's actually not that rare, either. What is rare is for doctors to know that, too, in my (limited) experience.

    1. Yeah, they only work at MASSIVELY high doses for me, and even there the effects are limited. Don't bother giving me 50mg/day, doc, it's not going to do anything but make me grumpy.