- Joined
- Mar 27, 2014
- Messages
- 4
So, after weeks of waiting, I was finally given my first infusion of Stelara. Or not.
The process of being admitted to the study left a bad taste in my mouth: After promising me I was sick enough yet being rejected for low lab numbers, colonoscopy results qualified me. The day of my infusion, the research coordinator looked at my health diary and told me my numbers weren't high enough to be in the study. Huh? "You're in the study" must mean different things to different people.
"Are you sure you felt that good on Monday?" *wink wink*. "A 1 can easily be changed to a 4." *wink wink*.
OK. So it's no longer about the scientific process, it's all about me. After fighting back the urge to walk out on the whole GI group, I apologized to Science and amended the diary. After the infusion, I was encouraged to fill out my diary honestly. Funny!
Three weeks of honest entry shows no change in bowel habits, but great improvement in general well-being. Yes, screwing with the baseline number will do that. At my first check-up, the research coordinator looked at the diary and wondered aloud why the numbers improved so much after only 3 weeks. Most patients don't see results for 2 months. Does she have memory loss?
Today I'm awash in negative emotion. It's hard enough being a guinea pig - not knowing if I'm getting medicine, wondering if another obstruction is just around the corner. Now I feel like a schmuck too. I was convinced by my doctor that this drug trial was best for my health. Stelara is promising, get in on the ground floor! Can I trust them anymore?
I don't think I have the right personality to be a research subject.
The process of being admitted to the study left a bad taste in my mouth: After promising me I was sick enough yet being rejected for low lab numbers, colonoscopy results qualified me. The day of my infusion, the research coordinator looked at my health diary and told me my numbers weren't high enough to be in the study. Huh? "You're in the study" must mean different things to different people.
"Are you sure you felt that good on Monday?" *wink wink*. "A 1 can easily be changed to a 4." *wink wink*.
OK. So it's no longer about the scientific process, it's all about me. After fighting back the urge to walk out on the whole GI group, I apologized to Science and amended the diary. After the infusion, I was encouraged to fill out my diary honestly. Funny!
Three weeks of honest entry shows no change in bowel habits, but great improvement in general well-being. Yes, screwing with the baseline number will do that. At my first check-up, the research coordinator looked at the diary and wondered aloud why the numbers improved so much after only 3 weeks. Most patients don't see results for 2 months. Does she have memory loss?
Today I'm awash in negative emotion. It's hard enough being a guinea pig - not knowing if I'm getting medicine, wondering if another obstruction is just around the corner. Now I feel like a schmuck too. I was convinced by my doctor that this drug trial was best for my health. Stelara is promising, get in on the ground floor! Can I trust them anymore?
I don't think I have the right personality to be a research subject.
