Jan 07, 2012
I am officially a study participant now, receiving either Avonex or DAC HYP. I get both types of injections, but one is a placebo. I was really hoping that I would be randomized into the DAC HYP (daclizumab) group, but I think I might be in the Avonex group.
First, I did a totally awesome job of giving myself the shot yesterday. The nurse said she should have videotaped me to teach other patients. Yeah, yeah, I'm sure you say that to all the girls. She gave my the DAC injection, which is subcutaneous and STUNG when the medicine was pushed in.
About six hours after the injections, I started feeling poorly... then very poorly. I had a fever, chills, severe pain (I would rate it 8 or 9, and I have had both gallstones and kidney stones--I know pain). This was with half of the Avonex dose siphoned out to start me off slower and having taken 600 mg of ibuprofen. It did not seem to make a dent. Although I was exhausted (pretty much my natural state, lol), I woke up feverish and sweating every 20 or 30 minutes until it calmed down around 4:00 am.
So unless they put some pretty good stuff in the placebo to fake us out, I think I am in the Avonex group. Dang it. Nothing against Avonex or those who have done well on it, but I wanted DAC HYP.
Get this: at yesterday's visit I was actually scolded for NOT telling them about minor symptoms that popped up. I am used to having to mount an impressive case to get neurologists to listen. These people seriously want to know every single tiny thing that happens to me. My nurse and neurologist gave me their cell phone numbers in addition to their email addresses!