Pesky Leukocytes Dash My Hopes of Joining a Trial of Mavenclad for MS
In December 2019, I was stopped in my tracks, or rather wheels, as I was about to have my third infusion of Ocrevus (ocrelizumab), the multiple sclerosis disease-modifying therapy (DMT) that I’d been taking every six months for the past year.
My neurologist had decided just a few days prior that my leukocyte count was too low and I was at risk of contracting progressive multifocal leukoencephalopathy, a horrific brain infection. We had a scratchy phone call in which the neurologist said my leukocyte count was something like 0.1 when it needed to be 1.0 to be safe.
The combination of a full course of Lemtrada (alemtuzumab), which I loathed, then Ocrevus had stripped my immune system naked. You’d think that would’ve been enough to quell my multiple sclerosis (MS), but it continued to degrade my brain’s gray matter. Seven years ago, I had to come off the DMT Gilenya (fingolimod) because the MS was breaking through, despite my not having any new sclerosis at all.
Apologies to any regular readers, as I’ve usually thrown in some humor by now. My long history in comedy makes it natural to do so. So here’s an attempt: On the upside, my ferocious hay fever was destroyed! Hey-ho.
I was literally stopped at the door to the Ocrevus infusion room. In response, I wailed in frustration, which wasn’t helped by having to get up at 5 a.m. to be ready for the hospital transport to get me there by 9 a.m. But really it was because I felt it was my last hope of holding back my MS.
Oh, and I was so right: Two massive relapses in only a few months struck me down while COVID-19 raged outside.
I’d been self-isolating since early in the pandemic due to my intensely compromised immune system and an acute knowledge of current affairs. Having run a topical comedy show for 30 years also had its upside.
My right arm was increasingly being affected by spasticity. It started in my right hand as I woke up the morning after my first Lemtrada dose. Loathe, loathe, loathe.
My neurologist suggested I try to participate in a U.K. clinical trial for Mavenclad (cladribine), known as the ChariotMS trial, as Mavenclad has been heavily indicated to help upper limb function in people with aggressive MS (that’s me, all right) or even those with secondary progressive MS. (I have now arrived at this station as well and was hoping ChariotMS would at least help me get on the platform in better spirits.)
It was a struggle even to get an assessment for possible trial participation. My neurologist sent at least three letters over two years, and I followed up with regular emails. COVID-19 no doubt had a lot to do with this. I was phoned last February and told that I’d made it onto the assessment ladder. Then nothing.
More emails and phone calls from me followed. Then I had a general Zoom meeting where I got to ask the head honcho of the whole trial what I should do. He suggested emailing him and the general email address of the trial. He told me where I could get the addresses for both.
I’m afraid that my background in media has come in handy. I have no shame in hassling my way through the quagmire of bureaucracy that disability throws at you. This is also true for other disabled friends and acquaintances in the media.
Two weeks ago, I got the phone call finally telling me to come in. It was at a nearby hospital, so it was relatively easy.
When I mentioned that I thought Mavenclad had already been approved in the U.S., they were strangely doubtful.
Fours hours of tests, including a final MRI, were stretched into a full day because the MRI machine wasn’t working properly. It was eventually fixed, but I didn’t get into the thing until about 5 p.m. I was absolutely shattered.
The intense banging and incessant clanking of its heavy metal dirge meant nothing to me. I’ve probably partaken more than 30 such scans over the last 15 years. I promptly fell asleep. They couldn’t wake me, even after resorting to shaking my foot.
Because I’d been moving around a little in sleepy-bye mode, some of the images probably were ruined. Of course, it didn’t matter anyway, as a few days later, I received the hesitant phone call of someone about to impart bad news. My leukocyte count was only 0.45, and it had to be at least 1.0 to qualify.
I could try having my blood tested in six months via my general practitioner, but because it’s taken over two years to climb from 0.1 to 0.45, that idea seems extremely unlikely.
At least now I don’t feel like a fraud for getting an early fourth COVID-19 booster for the immunosuppressed a couple weeks ago. And I won’t have to eat placebo sugar pills for the next two years. It’d be just my luck to fall on the 50% control side of the equation.
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