I finally heard back from my gastroenterologist’s office this afternoon–while I’m at headquarters in Boston, of course. Apparently I’m anemic, and my white blood cell count is pretty low. That could explain a lot of the fatigue and weakness symptoms I’ve been having. My doc’s putting me on iron. I’d been on it before, but he took me off it because my levels were fine and he was afraid it was messing with my digestive system. But I’m guessing with the bleeding I’ve been having, especially without the iron supplements, made me anemic again.
The WBC count is more worrying. It’s almost certainly because of the 6-MP. I have a love/hate relationship with this drug–it’s caused me all kinds of icky side effects, but it’s also given me more control of the UC than any other drug. And now I may have to go off it. He’s not going to take me off it just yet; he wants to get repeat labs in two weeks and go from there. I wasn’t having as many problems on 75 mg–it wasn’t until it got upped to 100 mg that I got really ill–so we’re both hoping that means going back down will solve the problem. But if it’s caused bone marrow toxicity, I may have to go off it totally.
I’m SO FRUSTRATED. The only drug that’s kept my immune system from ripping holes in my intestines might now be killing my bone marrow. If I go off it, I’ll probably get sicker with the UC, but obviously killing my bone marrow isn’t an acceptable scenario either. All I want is a drug that controls my illness without killing me. WHYYYYYY does that have to be so far out of reach?