Benlysta 1-year

Yup, I’ve been on Benlysta for a year. *Throws confetti* and whatnot.

I had my infusion on Tuesday. I got a massive headache from it despite drinking as much water as I always do. Can’t win ’em all. I got a bad dizzy spell during my infusion this time for some reason, I’m not sure why, but it could have been the food I ate for lunch, the infusion, or just a headache precursor. It scared me a little. I’ve never been that dizzy before. Luckily it was relatively short-lived. I was done with my infusion in under an hour which is quicker than I’m used to. I thought maybe that could have caused the dizziness too. Normally it takes an hour and a half or so.

I talked to the doctor for a while, and we talked about what to do next. If the benlysta isn’t working then she will want to put me on something else, but she also wants me to investigate other possibilities for my chronic pain, like MS or other neurological or possibly missing-enzymes type stuff. If it’s not the lupus making me hurt the way I do, then it doesn’t make sense to switch me off the benlysta. My blood work looks good, and I do have what she called a “solid lupus diagnosis” letting me know that I’ve tested positive for all the antibodies that lupus creates, which I thought was interesting. She takes good care of me, but is a little quiet when it comes to the sciencey side of things, so sometimes there’s a little factoid like that about myself that I wasn’t aware of. I don’t know the ins and outs of lupus the same way a doctor would, so I don’t expect her to get all sciencey, but I do think it’s interesting and I would like to know about my own body as much as I possibly can. My organ function is good, and everything seems to be kept at bay. It’s hard to know about white-cell counts since I’m also on the steroids for Addison’s, I’m not sure how much those influence my labs even though I’m only on a replacement dose, with occasional stress-dosing. But overall I feel like crap, so something doesn’t add up somewhere.

She gave me the name of another neuro who will probably be more thorough in thinking outside the lupus box. The first neuro wasn’t interested in investigating anything outside of my lupus. I’m still going to his office for the EMG/nerve conduction study tomorrow, which I’m hoping can tell me a little bit about what’s going on.

My weakness/numbness/clumsiness has been especially bothersome lately. The widespread nerve pain rudely wakes me up in the morning. My sympathetic nervous system likes to go whacko when I’m just relaxing on the couch. None of it makes much sense yet. I’m just crossing my fingers that they figure out what it is so I can feel like a person at some point, instead of an episode of House.

 

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