Where do I go from here?

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!

Heather

Thanks Carol... I'm in Alva. I'm not sure if you know where that is? All of my family lives in Medford. Thanks for your input... I'll see if I can't try to get the car thing under control!

Heather,
I'm sorry things are so rough for you now. I hope if you start feeling really bad you get to the ER however you need to. It doesn't seem right that they gave you nothing to replace what you are on and that they are just stopping you like that bam. But you seem strong, going to school and working, that's a lot.

As for the anxiety, I understand completely. I was a victim of home invasion, not once, but twice. The first time the counsellor said, the good thing about it was that it would never happen again, really low odds, and then a few years later, it happened again. I had trouble sleeping (I was attacked in my sleep both times) for so long and still get afraid sometimes to be home alone, though I feel very safe were I live now. The people here are nice and there is always someone to talk to, and maybe, since you are off your imuran, they could give you something for anxiety in hopes you don't stress out too much and have a flare. It seems the least your doc could do. I don't know what you already take, but maybe calling and speaking to the nurse might get you at least something. My doc did that for me when I had to go off my thyroid hormone and I'm still waiting to see another endo. The rest of my family was very grateful!LOL. I hope you feel better soon and that maybe you can get on a waiting list for a cancellation with the new rheumie and come in sooner. Best wishes for feeling better and getting into the new doc soon.

Thanks everyone... I'm not sure if the Imuran is the cause of the low potassium or not. It finally went up after I went off the imuran though. I'm only taking 3 potassiums a day now. I definitely know the dangers of it, so I NEVER skip one. Pat - I THINK you said you see Dr. Albert? That's who my appointment is with in August. Hopefully she'll be better than my current one. She has to be, it can't get much worse, in my opinion!

Heather,

I'm so glad you got in to see Dr. Albert. Her office has been closed at times so you were fortunate to get an appointment. I hope you like her. She's quiet so I always go armed with questions. I do know that she has a great reputation among other doctors in town. Let me know how it goes. You really have quite a drive to get down to see her and I hope it's not too much for you.

Hang in there till the 13th.

Pat