I’ll admit I was nervous as I sat in the infusion chair for Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions. I’d read a lot, and talked with my neurologist a lot, about the drug. I knew the benefits of Lemtrada could be great. My multiple sclerosis progression could be stopped dead in its tracks. Some MS patients even had some of their symptoms improved.
But there also were risks.
The drug would weaken my immune system in order to rebuild it. Lesser symptoms might appear, including chills, fever, hives, rash, scratchy throat, body aches, nausea and significant fatigue. I’ve mentioned the more serious side effects in earlier columns. You also can read about them on the Lemtrada website.
So, I was nervous.
But, convinced that my potential gains outweighed my possible risks, I told Carrie, my infusion nurse at the MS Center of Greater Washington, D.C., to bring it on:
In it went to the IV bag for a four-hour infusion. (The actual Lemtrada infusion was preceded by an hour’s drip of the steroid Solu-Medrol to calm my immune system. And Benedryl by IV). Now the drugs are pumping and so is water — lots and lots of water. I forced myself to chug a 17-ounce bottle most hours, gulping five bottles that first day.
At midday things were proceeding well:
My vital signs were taken each hour. During the course of the day my temperature rose slightly and I felt some pressure in my head, but no actual headache. The head pressure eased when a little Toradol was added to my IV during the final hour and my temp came down quickly. I had a blanket standing by, because many patients have reported chills, but I never needed it.
Days 2 – 5
Day 2 was the same routine. Lots of water intake and output, a little rise in body temp, but no head pressure or pain. My blood pressure rose a bit. Rather than feeling chilly, I felt warm.
The final three days my BP continued to be above my normal range, but not high enough to cause any concern. I was told that’s a result of the steroids. No longer was I warm. Rather, I felt comfortable and, sometimes, cool.
At the end of my five days I felt good. The steroids had kept my energy high and the meds that I’d been taking since two days before the infusions began had held the uncomfortable side effects at bay. I even felt good enough to drive my wife and myself home, a three-hour trip.
After my last infusion of the week I was told to go slow. The “Things to Remember” sheet I was given by the MS Center of Greater Washington warned: “Take it easy. Your body is starting the first leg of your journey. You are going to feel achy, weak, you may experience symptoms you haven’t experienced in years. You may have no energy at all.”
I felt pretty good yesterday, my first post-infusion day. A little tired, but I expected that. But, as I write this on Day 7 of my journey, I’m beginning to gain a better sense of what this trip might be like. I woke up feeling a little “spacey.” As the day went on my walking began to slow. My legs dragged more than usual. The feeling is similar to what I remember exacerbation used to be like, and I haven’t had one of those in many, many years.
The folks at the MS Center told told me that the first week or two post-infusion can be difficult. But they also tell me that I’ll get stronger, slowly and steadily, as each month goes by and my immune system re-builds.
I’ll keep you all posted.
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