So.... about 2 weeks ago I went to Enid to have labwork done. My potassium was low, as always. They upped me to 5 pills a day. Wonderful - they're horse pills and grainy and extremely hard to swallow. This put me up to taking 20 different pills a day. They wanted to check my lab work again in a week. So... I go back a week later. Potassium is lower than before. They up me to 6 pills a day. My white blood cell count was also low. This isn't good. Dr. Dexeus' office calls and tells me to stop taking the Imuran and they wanted me to come back in 3 days for more labwork.
I went back 3 days later. My potassium was right at the bottom number for normal range. My white blood cell count was normal. This might sound like a good thing, but it's not. My body is rejecting the Imuran and I can't take it anymore. While I would love to be off of that stupid medicine, it's not time yet. I haven't been on it long enough to help anything. So, basically, I feel like the last 10 months of taking this horrible pill has done no good. And now I can't even take it anymore. My potassium also went up when I wasn't on it, so maybe it's affecting that too. I go back on Wednesday to have more labwork done.
I guess I just don't know where I go from here. I'm no longer taking the medicine that's supposed to make me better. I can't get into my new rheumatologist until August 13, so until then I'm not on anything to control my lupus. I can already tell a difference. I didn't work this morning because I was sick. The medicine I have to combat my nauseaness wipes me out. Like literally, I can't do anything for the rest of the day. When you work in the mornings and take 9 hours of class in the summer.... this isn't an option. My joints are stiff and sore again and I hope it doesn't get as bad as it was last summer. I thought after nearly a year I would be making some progress. Right now, I guess we're back at square one.
I guess I just needed to vent to people who understand. My friends understand, but they don't have any idea what I'm going through. This question is completely unrelated, but... I have been in 3 different car accidents, but I've never been driving. Now whenever I am in a big city and I'm a passenger, I am terrified that we're going to have a wreck. It gets so bad that I start panicking and gasping when we're going by another car and sometimes it gets to the point that my chest feels so heavy. I know this isn't normal, but is it anxiety? Is there anything I can do to talk myself down? Thanks so much to everyone here... you're always so nice and willing to help!
I am sorry you had to go off the imuran but it seems it was really harming you. Low potassium especially can be very dangerous! I have been hospitalized 3 times for it, one of those times in the coronary care ICU unit, and I still take 12 potassium pills a day. (You are right, they are disgusting, but you will die without the proper amount of potassium.) My EKG was very abnormal each time I was hospitalized and I wasn't aware of it at all. It is good that you are seeing a new rheumatologist and as someone else said it is a matter of hit and miss. There has to be something else that will work for you and not be so harmful at the same time. I know it is hard but try to be patient, and keep up that potassium.