Benlysta #7 and #8, and some other stuff.

This is a combo blog, of my last two infusions. I took a break from writing because I had a lot going on in the way of trying to get my infusions, and the insurance company messing it up as usual.

Both infusions went great. For #7 I think I was a little more headache-y than usual. It can be hard to remember to drink water to ward off the headaches, especially when your drive home is over an hour and you don’t want to spend the majority of it “having to pee.” 

#8 was better as far as headaches go. I have been better about drinking water, probably almost too good about it, because I have been having bad dry mouth as a side effect and I’m always thirsty. I’ve been peeing a lot, so I went to see my rheumatologist for a separate appointment to make sure it isn’t something serious. I gave a urine sample, which is always puddles of fun if you’re a girl. For some reason, doctors in California refuse to have funnels to make it easier. My east coast friends couldn’t believe we don’t use those, and I didn’t even realize they made such a thing. Anyway, they’re checking to see if I could have a mild UTI, which are common in people with autoimmune issues, especially lupus. I don’t have any other symptoms besides being really thirsty and peeing a lot. The doctor seemed to think maybe I was just drinking too much water. I told her I drink probably 6-7 bottles a day, which doesn’t seem like anything outside a normal amount to me, especially with my sudden sensitivity to salt. I can’t eat hardly any salt without having heart palpitations after, and that usually makes me drink more water to get rid of it. She wanted me to restrict my liquid intake, but I’m not comfortable doing that, especially since it’s such a dry climate here, and since my Addison’s disease effects my electrolytes. I will, however, make it a point to drink something besides water. I want to make sure I’m not having so much water that I’m depleting my electrolytes. With all the vitamin-enhanced drinks they have now, it’s easy to find something that will work, and I’m also a big fan of smoothies and decaf iced tea.

My next infusion is in about a week and a half, and I’ll call tomorrow to find out the results of my urine sample. We also talked about seeing a pulminologist to see if my “heavy chest” symptoms are actually asthma, and treat it with albuterol. I’m not excited about that since I already have heart palpitations and albuterol can cause them, but if I am asthmatic I can’t go without it. I had pollen and exercise-induced asthma as a kid, and maybe with the lupus and lung sensitivity, it’s making an appearance again.

My mom and I did the run-around to get some records together for the neurosurgeon. There’s still a few more things we have to collect before we mail them in. After he receives them and looks them over I’ll be able to schedule an appointment. Even though I will probably get an appointment in with him a month from now, it seems like an eternity. I know I won’t get relief from my headaches just by talking to him, but I’d like to have a plan. I really hate it when things are up in the air.

I have an appointment with my Endocrinologist in a few weeks. I have a feeling he will be testing my thyroid because I have a lot of unexplained symptoms. The heart palpitations, hot flashes and chills, sweating, and weight loss could all be explained by a thyroid issue. They could also be explained by the Chiari so it would be important to rule out my thyroid. It is possible I need a steroid adjustment for my Addison’s too. Last time I saw him I told him I suddenly can’t tolerate salt (which is weird for addison’s, we are supposed to eat more salt) and he just said not to eat salt. That was an OK answer 8 months ago, but I want a real answer this time. Something is obviously going on.

Well, I think that’s everything. Ta ta for now.


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