Round Three

The thought of getting rid of my cane is still stuck in my head. That’s how I went into my Lemtrada treatment, that’s what I had hoped to get out of this powerful drug. 

I assumed that two rounds of this drug will set me straight. I should have known better.

I’ve lived with this illness for more than fifteen years and have watched it slowly progress to the dark side. Ok, not the dark side(too dramatic), but perhaps a little-less-pleasant side.

June of 2020 saw an appointment with my neurologist, but with a twist—Zoom link or phone call. I chose the phone call. It was just to check on how I was progressing. He was happy with my bloodwork and wanted to confirm my MRI appointment which was scheduled for later in the month.

No problem there. I was an expert at sitting through an MRI. At last count, I think I was at 24.

The rest of the year went smoothly. Monthly bloodwork included.

In December of 2020, my employer’s doctor called and wanted to let me know that there is a certainty to my health outlook and it was time to take a medical retirement. I cut a deal for a retirement in April of 2021. I’m unsure of my ability to continue working and am grateful that I was employed for as long as I was.

June of 2021, I had another appointment with my neurologist, and as COVID restrictions had eased I chose an in-person meeting. 

My reasoning for that is there is a new Italian restaurant called Artusi Restaurant, close to Honour House, which I wanted to try. It did not disappoint. I showed up right at opening and was told there was one seat available for an hour (stupidly I hadn’t thought of making a reservation) despite the restaurant being empty. From my seat I had a view of part of the workings of the kitchen. It was like watching a well-choreographed ballet as staff prepared for the supper onslaught. 

I ordered Pici Al Cinghiale, not having a clue what will be presented. Simply put—Delicious.

The following day I met with the neurologist. He informed me that my most recent MRI showed a new lesion, and he recommends a third round of Lemtrada. The clinic will call and set up a time, hopefully sooner than later.

I left the city satisfied I had found a great new restaurant. However, I was not too excited about a third round of Lemtrada.

Not a couple days later the clinic called to get the ball rolling. Because of the drug’s cost, they had to get funding secured. This round will be three days with steroids administered each day which I’m excited about because steroids make it easier to get through infusion days.

The clinic set me up for the end of August.

I showed up, conquered three more days of the clinic, then went home. Unfortunately, there were no interesting people at the clinic during my time to have any conversation with (excluding staff who were always enjoyable to converse with). I’m sure they were interesting—everyone has an interesting story—but no one was in a talking mood. MS can do that to you.

Once home, I spent the rest of the day as per normal. 

The next day I awoke in a not-feeling-so-great mood. The day after I had trouble getting out of bed. The day after that was much the same. 

That experience was weird. I thought I was strong enough to get through anything.  I’m still fairly mobile in my day to day.

By the fourth day I could kind of function. A total weird experience and just a little different than the last two rounds.

I convinced myself it was a different experience because I had taken a couple rounds of COVID shots. My thinking at the time was there was no study to detail the interaction between the Pfizer COVID vaccine and Lemtrada.

That must be it.

It convinced me of a couple things. No more COVID vaccine for me; no more Lemtrada. A fourth round is possible, but no more according to my doc. 

I spent the rest of the year feeling pretty good. Up to the end of the year, my decision to take Lemtrada felt like it was a smart call. I believe I made the right decision. My bloodwork has been coming back okay with just a few minor, expected, things. 

My kidney function, a major side effect, is holding at a certain low level, but not causing any issues. At this point, I’m looking great coming into 2022.

I made the right call and am wishing I made this leap of faith sooner.

However………………..