Alemtuzemab Trial Part 2, Day 1

For those who haven't been following, a quick summary. I was diagnosed with relapsing remitting MS in 2005, and soon thereafter, started treatment on Avonex, a weekly intramuscular injection. In 2007 and 2008, I had relapses, and the last MRI showed enough progress that my treatment was changed to a higher dose interferon, Betaseron, an every other day subcutaneous injection. A year later, I had another significant relapse, so my doctor offered a trial I could participate in. The control group takes Rebif, similar to Betaseron but 3x weekly, and the trial group takes a cancer drug known as Compath or Alemtuzemab. I signed up after we discussed the details, and was selected for the Alemtuzemab injections, which are done by IV for 5 days, and then after a year, another 3 days. The first three days of both IV injections include a steroid called solumedrol. In addition, I have monthly visits to the research center for tests, and quarterly visits to the trial doctor and my neurologist.

It has been a year since I did the 5 day treatment, so today is the first day of my 3 day IV treatment. Another person is on the same time schedule as me, so T was there again. He has not had any relapses in the past year. Mine may stop with the steroid treatment. (I currently have numbness, maybe dullness is a better word, in my fingers, toes, and shins, and a little in my left stomach area. It is not painful, just annoying.) The trial nurse, E, got my IV in on the third try, so the crying was kept to a minimum. She took blood from my right arm (IV in the left), took vitals, started the steroid drip, and shortly thereafter, my mouth started getting the metallic taste. After an hour, we switched to the Alemtuzemab drip. I brought some snacks that I thought I could eat with the yuck mouth taste so I could get through the day. I also brought several drinks to keep hydrated so E would be able to find a vein for the blood draw at the end of the day. The downside is that I had to go to the bathroom across the hall and carry my IV and battery box.

So Day 1 is done, I have an IV plug in my hand, and I am home and hungry.