Trial after effects

I went to work but wasn't feeling my best. Actually, my head was hurting and my scalp is itchy but I'm taking any more Benadryl. Later in the day, I started feeling like I might be sick to my stomach, but I made it home and laid down for a while and then felt better, enough to get some stuff done before heading to bed.

Trial after effects

I was up for a few hours yesterday and then went back to sleep. I got up for "dinner" at 11, stayed up for an hour or two and then went back to bed. I still don't feel motivated to do anything. Maybe I won't.

Trial after effects

I can't believe I slept past one o'clock! M tried to wake me around 7 or 8 but I went back to sleep. He said I must have needed it. I don't feel like doing anything. I also took several Benadryl because I was itching and rashy every time I woke up.

Alemtuzemab Trial Part 2, the day after

Last night, I had a similar experience from the previous evenings: the steroids gave me that stay up, don't sleep rush. I took a Benadryl and started getting ready for bed. Then I noticed the itching. I had a rash (hives?) all over my back and the top of my front. I took another Benadryl and put lotion on and went to bed. I was able to sleep, and I woke up without the rash this morning.

I decided to take Benadryl throughout the day so I wouldn't end up with itching while at work, but it did make me feel tired. I worked a long day trying to catch up with client stuff. I'm so mentally tired! Anyway, I think the worst is over, but I'll take one more Benadryl before I head to bed.

By the way, I still have the numbness in the hands and feet. I don't think the steroids are having any impact on it. But it's not getting worse, so I think/hope/pray that it will go away on it's own like it has in the past.

Alemtuzemab Trial Part 2, Day 3

Today was the third and last day of infusion. After the Solumedrol steriod drip, the Alemtuzemab drip was sped up and everything went smoothly. T and I were back together in another room and neither of us had itching, which would have slowed down the drip. I'll still take Benadryl tonight in case the itching is just delayed.

The trial continues for the next year, as we are monitored with monthly research visits and quarterly doctor evaluations. Our nurse, E, said she is going to a meeting next week to find out more information about the extension trial that has been granted after the initial trial period ends. It is anticipated we will get another 3 day infusion in a year and continue monitoring. So my next visit at the research center, I should get my MRI results and find out about the extension trial.

Alemtuzemab Trial Part 2, Day 2

I forgot that yesterday when I met with Dr. G, he mentioned that one of my thyroid numbers came back abnormal but he wasn't concerned since the other numbers were fine. However, he suggested (more than once) that I review the results with my general doctor. Unfortunately, my GP died recently and I haven't replaced him yet.

Last night, my back started hurting like it does, and I got a headache that I thought was related. In hindsight, I can't believe I didn't connect the dots and self medicate. I went to bed and couldn't sleep. When M came to bed (very, very late) he was surprised to see me wide awake. I would have been up doing something if my head wasn't killing me. He reminded me I went through this last time, so I took a Tylenol and a Benadryl and went to the other room to toss and turn. I did manage to get some sleep.

Today's treatment went smoothly, sped up the drip a little. I got a nap while I was getting the Alemtuzemab drip. For some reason, they put me and T in different rooms, so E had to go back and forth. I'm nervous about the next side effect: itching, usually the 3rd or 4th day.

I found out that a great lady I used to know, L, works part time at the office, sounded like filing type stuff. She was our PetSmart trainer for Cassi and dog sat for us. She loved having Cassi, since Cassi is great with little dogs and she has a bunch of them. It's weird to see someone and recognize them but since you're in the wrong setting, you can't place who they are or how you know them, but as soon as I heard her name, I knew. She said her partner, M, had asked about me, and that I look better than I did back then. Apparently I was showing signs of my MS at the time, but I don't remember what, maybe balance and walking issues. I'll have to keep her on my dog sitting list.

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.