Wednesday, March 27, 2013

Benlysta, continued.

For those who have asked recently, yes, I am still taking Benlysta. And it certainly still helping me. Unfortunately, it is not enough to keep my disease under control all by itself, but it definitely helps lower my fever and pain level. It ought to, given that it's costing my insurance company $3500 a month. #Ridiculous.

I find that the Benlysta starts to take effect within a few days of my infusion. Unfortunately, it tends to wear off after three weeks, and I'm scheduled to take it every four weeks. So one week a month is living hell. But hey, that's what side-effect medicines are for, right? Right? And the immunosuppressants that make me feel horrible and make me lose my hair? Fun times, my friends, fun times.

I have not experienced too many side-effects from the Benlysta thus far. I generally get a slight fever after taking it (despite being given Tylenol/Paracetamol before they even stick the IV in my arm), and a headache that lasts a day or two. Luckily, the headache is not a migraine, and responds to Aleve. Unluckily, my platelet count is so low that I'm not supposed to be taking Aleve. More fun! I also experience a day or two of bone-weary fatigue after the infusion. But, honestly, when do we lupus patients not feel like two-week old roadkill lying in the sun on the side of an Arizona highway?

The Supreme Ruler of the Home:
The Early Years.
So, in the end, if you are lucky like I temporarily am, and have insurance that will cover Benlysta, I do recommend it. It takes the pain down by two to three points on the dreaded pain scale, and makes it so I rarely run a fever these days. Which is a definite improvement over the "always running a fever" thing I was doing in the pre-Benlysta days. Of course, you may find yourself falling asleep at 7:30 the evening of the infusion, but hey, maybe you'll be lucky and wake up at 3:30 with insomnia, nausea and a cat that wants to played with NOW. Nothing like trying to write a thesis with a cat sitting on your lap batting things off your desk. Good thing she's so cute...

1 comment:

  1. Well . . . I'm glad you have three weeks of the month that aren't living hell, (although Resurrected Roadkill isn't what I wish for you for those weeks.) May your thesis progress, your stomach digest, and your cat take a nap.