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Tuesday, October 30, 2012

Ustekinumab.. First Infusion

This blog is about my clinical trial experience thus far…
 The big day has come and gone. I finally had my first infusion of the clinical trial – Ustekinumab.
My first part of the day consisted of the finalities of making sure I “pass” and am indeed sick enough for the trial… I held my breath a bit while the nurse tallied my points…
I passed! (Is this a good thing I wonder?)
They sent me to the clinical research center where the nurses follow a recipe (as they said, because they work with 600 clinical studies) as to how I was supposed to be treated. I received an hour’s worth of infusion and then had to wait an hour so they could test my blood levels to make sure the drug was actually staying in my system and doing what it’s supposed to do. This is actually a really fascinating development in the medical field. Instead of giving a dosage based on age or weight, drug companies and doctors are looking at blood levels to give individual dosages to patients. Although they aren’t doing that in the trial, it’s great to know they might be able to individualize our care more.
The trial was super easy – all I had to do was lie in bed, watch t.v., and ask for any food that I wanted. Pretty sweet deal. It brought me back to my days of Remicade – being in high school and missing a whole day to pig out and sleep in the hospital – it’s weird to think about how long ago that was.
I was super hopeful about this medication. I actually feel way worse today than I had before, but I’m still hoping that maybe my body is just getting used to having a new drug in my system. This one has to work, it just does. I don’t care what the Universe says, it better listen to what I say.

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