After three rounds of Lemtrada, and despite not chucking my cane away, I was looking at the world through rose-coloured glasses. Then I had two floods in my house late in the year and that tested, but could not spoil, my rosy outlook.
So as the year 2022 came in we installed new flooring in the house, sold our camper then bought a motorhome—and with Covid restrictions in the rear-view mirror—looked forward to a great year.
However, I still had to do my monthly blood work—3.5 years to go. that will tie me up for an hour a day every month, but not slow me down. No problem. Roll into the clinic, give some blood—repeat.
Then came May. My bloodwork came back with dangerously low platelets (a known side-effect of Lemtrada).
I asked doc internet what that meant. Platelets have a very specific primary function to control bleeding. Stopping and preventing.
The following day I received the call from the clinic. “Go to the hospital, immediately,” the nurse said. My email then lit up with instructions from my neurologist.
Breaking down the instructions into layman’s terms – this can be fixed with a simple round of steroids.
“Ooh is that it?” I thought. “No problem,” the voice inside my head said to me, not listening.
With the doc’s note in hand, I showed up to the emergency room. I, like all the others there, waited to be seen in a long hallway.
Interesting people in the waiting area. One guy had a bug in his ear that wouldn’t come out. Every once in a while, the bug would do bug-type stuff in his ear which would cause him some alarm. The nurse came out to see him as he became increasingly disturbed(ing). In their conversation, the nurse, and everyone within earshot, learned the bug crawled in about a week ago.
I was then called up to provide blood. The blood taker set up in the hallway where I gave blood in front of an audience. I spent another hour, or so, with Mr. bug-in-his-ear, then I was called in to see a doc. I’ve got my note from the doc, so this should be quick.
Doc wasn’t interested in my note, which was on brain-centre official letterhead. He asked a bunch of questions (all answered in the note).
I explained the situation, Lemtrada and its side effects, to an overworked doc who wasn’t really listening—my note still in my hand. The doc left, only to return a few minutes later with my recent blood test in his hand. He compared that to the blood test I provided a few days ago and said my bloodwork showed an increase in my platelets. He told me to go home and that I would be okay.
The note from the neurologist still in my hand. It can’t be that serious, I’m thinking. So, I go home and carry on as if I’m normal.
In June my blood tests show my platelet count is low, but not dangerously low. The next day we began our way across the country to a family reunion in our new motorhome. After about six hours of driving, I noticed my arms began to itch. Later, I noticed little red bumps appear on my forearms. Weird, I thought, but not relating it to anything important (perhaps I ate something weird).
So, I figure it’s an allergic reaction and all I need is some antihistamine which I pick up at the nearest drug store at our first overnight stop. During the next six days, or so, I loaded up on antihistamine. The drug kind of worked, but the rash kept appearing.
On the way back from the family reunion I decided to stop and call the clinic that administered the Lemtrada to inquire if it’s possible that this rash is related.
I didn’t get to speak with the doctor, however, was somewhat assured that the rash was likely not related. A read of that last sentence assures me that I did not get a satisfactory answer.
It got to the point that over the next few months I experienced more issues I believed to be related to Lemtrada. I, once again, experienced a dangerously low platelet count. I went directly to the clinic at UBC, where the clinic was sure, but unsure, of what to do with me. I got steroids, lots of steroids.
After that round, and the steroids they gave me to take home, I went home. The following day is when I discovered that coming off steroids is akin to coming off a heavy drug addiction (like heroin or crack cocaine). I was down for about three days.
Fast forward, my platelets were low—again. Again, the clinic called and directed me, with another note from the clinic, to go to the emergency room. I did and was met with the same response as the last emerg visit. This time I got to spend the night sharing a single emergency room stall with a woman who had drank far too much alcohol. I had trouble sleeping that night as my roommate snored and farted the night away.
However, the morning came with a meeting with an internal medicine doctor who took my note from UBC Clinic, asked a bunch of questions about Lemtrada, and the note. He prescribed more steroids, a little different than the last ones, and sent me home.
Platelet count good ever since.
On The Road With MS 