I’m having my first big flare since I started Benlysta. I have had other flares while on Benlysta, but they were mostly at the beginning and pretty manageable. This flare is more like the ones I had even before I was on the max dose of Plaquenil. I’ve been waking up at 3-4am hurting everywhere. It’s like the aches you get when you have the flu. I’ve also been having a problem itching. I don’t have a rash, so I’m thinking it’s part of the nerve pain. It’s really annoying and it keeps me awake. I’ve also been having a sore throat and I wake up in pain from that too.
All in all, I’m sleeping like shit.
I have no energy, in part because of not sleeping, but flares just make you dog-ass-tired. I get so tired I can’t bare to stand up sometimes.
My pain is most intense in my legs. I have a problem with my lower back that makes my ass and legs hurt pretty badly. My knees have been swollen lately, which is odd, I don’t usually get swelling in my joints when they hurt. My knees have been a problem since I was little, though.
I don’t remember if I blogged about it or not but my lymphocites are low for some reason. I’m supposed to have blood drawn a week before my infusion to see what they are, and if they are too low, I can’t have the infusion. I don’t really know what that will mean for future treatments. Probably something along the lines of switching to Rituxan or Cytoxen. I heard those are gnarly.
In other news, I haven’t had the MRI yet. I’ve been taking muscle relaxer (robaxin) first thing in the morning before any of the spasms start in my neck, and it’s been helping, but it’s also been making me feel woozy all day long. I only take a really small dose. That’s how meds work. You trade one uncomfortable thing for another. It’s never just relief. There’s always a side-effect or 12 to deal with, and you have to decide if the side-effect is better than the pain or not. Sometimes it’s not. I think that’s something healthy people don’t understand. You can’t just take your pills and feel better.
I’m still trying to be active. It’s a bitch. I really need a better exercise plan than walking my dog, but I’m having a hard time just doing that right now. I’ve managed to put on a few pounds and stay at 111-112, but I’d really like to be at 120.
Other than that, I’m still Jill. I’m still awesome. Don’t miss out.