I went to the doctor today.
It’s not secret I hate my infusions. Feeling like you have the flu on crack once a month isn’t fun. And be thankful Internets, because I haven’t taken you to tmi-town with the other side effects I have been having.
So, anyway. I haven’t been sleeping at night, and I have been passing out like a zombie in the day. I get the infusion and get MAYBE a few days of feeling ok. Honestly, most of the time I just feel like crap. Today, my dr said that there is just way too much swelling going on, at this point I should be doing a whole lot better than I am. The negative side effects greatly outweigh the minimal benefits. So, what’s next?
My options were to go back to the 4hr infusion every 6-8 weeks, it’s called Remicade. I have been on it once before and failed. Or, there is a new medication. It is a once monthly injection, just approved in May. The problem? She has not prescribed it to anyone yet, not at the va, or at her practice at the U of M. The VA doesn’t even have it on their list of available medications yet. So, a request has to be submitted listing the reasons why I need it and once it is approved then they will order the medication. It could be a month before all of that is done.
Until then I will stop getting the monthly infusion I was getting (yay!) so there is no overlap in meds (because that puts me at great risk for infection). This means that soon I will be a hurting unit. (boo!) To try to cover that gap my dr gave me an injection of steroids today, she called it a super boost. It makes me sound like a little rocket ship of roids, no? Hopefully it will keep me from flaring.
I know I should be thankful that I have a new medication to try…. but mostly I just feel scared. My dr and nurse say that they learn so much from me (I was the only patient they had on this last infusion, and the only patient they have that has failed on so many of the treatments. I am such an over-achiever at failure!! woot!) They said that I am like a pioneer, trying out these meds and helping them learn more about them helps other patients. I think I was supposed to feel better after they said that, but instead I just feel like a science experiment.
I suppose it would help if I were a more positive person, but after failing on one drug after another for 15 years you kinda lose the chipper outlook. Who am I kidding? I have never had a chipper outlook. But, I am even more negative than USUAL when it comes to new meds.
I am thinking things like, what awful side effects is THIS drug going to give me? What am I risking by not knowing the long term side effects of this drug? What if it doesn’t work? What if I start flaring before it gets a chance to start working? What if there is nothing new to try when I fail on this drug?
I don’t know. It sucks. I try not to whine, but I am just plain tired of doing this.