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?
Saw my gastroenterologist today. I thought the appointment was supposed to be with one of the NP’s in the practice, but he apparently took over. He was PISSED when he found out about the crap his office staff had tried to pull with the appointments. He told me if they try that again, I should tell them I have ulcerative colitis and need to be followed closely, and if they still give me problems, leave a message for him and he’ll personally schedule me in.
He said he’s just going to keep me on the Entocort, since it’s not causing me any problems to be on it but it causes tons of problems when I try to go off it. It’s such a relief that he’s not going to keep trying to get me off it–I’ve dealt with a lot of doctors who just didn’t care about the side effects of med changes; they’d just tell me to keep doing whatever they said no matter how bad it got.
He was also very concerned about the fatigue and weakness, and he agreed that the 6-MP was the likeliest culprit. He also is concerned that it may be causing liver issues, so I have to go get a bunch of labs drawn on Monday after the convention. In the meantime, he’s having me go down from 100 mg to 75 mg. He only wants to do one med change at a time, but if decreasing the 6-MP causes more problems, then we’ll either increase the Humira to every week or switch me to Remicade.
It’s just so nice to have a doctor who’s so responsive and doesn’t blow me off because I’m crazy. He’s literally the best doctor I’ve ever had. I wish he could be my primary care doc too. Or maybe somebody should just clone him so he could be everyone’s doctor in every specialty.