After several weeks of falling apart I went in for a steroid shot two days ago and ended up "giving blood". A nurse called yesterday and said that my white blood count was way better than in October (I had pneumonia) but still not in the normal range. After posting here and reading a bit I called back this morning and left a message for my dr. explaining that I've been off Imuran for six weeks and just got back on it in the past couple days.
So a few minutes ago the nurse called again and said "Dr. says as long as you're feeling fine just don't go back on the Imuran." A pause. Then she says "Oh, I guess if you came in for a steroid shot you're not feeling fine, are you?"
Duh.
She stammered a bit about why "Dr" missed that and made an appointment for me to come in two weeks from now. Don't take the Imuran until then, she says.
So, another two weeks of Imuran and I can expect to be feeling as poorly as I was when I got the shot two days ago. And from there..... well, I expect my options are to take Imuran and have dangerously low WBC or go off and: A) go back on prednisone or B) be virtually bed bound.
I can't think of another option, and those are the only ones he's ever offered me. It's been so bad these past few weeks, as bad as when I was first dx. Pain out of control. Too much fatigue to get out of bed. I went a week without a shower because I couldn't handle the exertion of what's involved in taking a shower. (You can imagine what my house looks like)
Am I missing something? Are there other options out there? I'm not the kind of sick where anything bigger would be considered, I don't think. My organs are fine and my big symptoms are chronic and constant pain and fatigue.
Ugh. What now?
Sunny
feeling pretty bummed out
So a few minutes ago the nurse called again and said "Dr. says as long as you're feeling fine just don't go back on the Imuran." A pause. Then she says "Oh, I guess if you came in for a steroid shot you're not feeling fine, are you?"
Duh.
She stammered a bit about why "Dr" missed that and made an appointment for me to come in two weeks from now. Don't take the Imuran until then, she says.
So, another two weeks of Imuran and I can expect to be feeling as poorly as I was when I got the shot two days ago. And from there..... well, I expect my options are to take Imuran and have dangerously low WBC or go off and: A) go back on prednisone or B) be virtually bed bound.
I can't think of another option, and those are the only ones he's ever offered me. It's been so bad these past few weeks, as bad as when I was first dx. Pain out of control. Too much fatigue to get out of bed. I went a week without a shower because I couldn't handle the exertion of what's involved in taking a shower. (You can imagine what my house looks like)
Am I missing something? Are there other options out there? I'm not the kind of sick where anything bigger would be considered, I don't think. My organs are fine and my big symptoms are chronic and constant pain and fatigue.
Ugh. What now?
Sunny
feeling pretty bummed out