Fighting Fire With Fire: The War Between Lemtrada and My MS
“So can you lift me up/ And turn these ashes into flames/ ‘Cause I have overcome/ More than words will ever say.” — Kate Voegele
My relapsing-remitting multiple sclerosis (RRMS) diagnosis stole my life from me. The reverberations of this unwelcome thunderbolt were astounding. Coming to terms with a condition for which there’s no cure is not an easy thing by any means. But enduring such a violent, unforgiving onset was especially traumatizing as it led to my disease-modifying treatment, Lemtrada (alemtuzumab).
I’m not usually one to remember dates, but Jan. 4, 2017, five days before my 26th birthday, was the date my MS diagnosis flipped my world upside down. After a year of uncertainty, I felt a slight glimmer of relief that there was finally an explanation. By and large, however, confusion and fear were the headliners in the concert of my mind.
In the intervening two years before starting Lemtrada, I was battling relapses that were stacking up with no respite. I was going into a new relapse before the previous one ended. This was when symptoms such as leg spasms and altered sensations in most of my body made their ugly appearance.
Initially, they weren’t hugely severe. Slowly but surely, they got worse. The onslaught of relapses prevented me from recovering from each one. The aggressive nature meant that I qualified for the equally aggressive treatment Lemtrada.
Lemtrada, a former chemotherapy treatment, involves stripping down some cells of the immune system to enable them to regenerate healthier. This means that there need to be tests run before treatment to ensure there aren’t any nasty beasts hibernating that could be roused when the body’s defenses are down.
In my case, frustratingly, I tested positive for latent asymptomatic tuberculosis. This meant another referral to the respiratory team and the wait that ensued. It meant a further three-month course of antibiotics before I could finally undergo Lemtrada.
By this time, I was struggling with a catalog of symptoms, some invisible, some as clear as day. At my sister’s wedding at Christmastime 2018, I was unable to join the bridal procession because I couldn’t walk. Two men had to lift me down a flight of slippery steps outside. The frustration at the delay migrated into anger when my mobility and balance further declined during a paralyzing relapse, one that I wholeheartedly believe wouldn’t have happened if not for the delay.
To say I staggered into the hospital in February 2019 to commence my infusions would be putting it mildly. Despite the boost of the steroids administered alongside Lemtrada, I was fully paralyzed from the waist down by the end of the fifth and final infusion and required a wheelchair.
The actual experience of undergoing Lemtrada, while I can say it was worth it in the end, was very much an attack on my body.
The second day dawned in a stifling hotel room with my mother and sister. I woke up before them, went to answer nature’s call, and the pure momentum of attempting to sit up and swing my legs off the bed, which I could do the previous day, made my limp body slip off the sweat-soaked sheets onto the floor. The onslaught of ferocious medication from the previous day alongside the fiery heat of the hotel room led me to overheat for the first time since diagnosis. I was unable to move from the neck down.
It was a glimpse into the paralysis that would shortly ensue, though I didn’t know that at the time. My distress woke my mother and sister. Together they got me back in bed and doused towels and sheets in cold water to bring my temperature down. It wasn’t easy to make it to the car to get to the hospital for my infusion, but we managed. Once there, we found a wheelchair, which I required constantly from then on.
Lemtrada has been my saving grace in the long run, but the three years since my last round have truly been a battle. The treatment was fighting fire with fire. Eventually, Lemtrada’s fire assuaged my paralysis, but it did take its time. Those were some of the darkest moments in my life, especially not knowing when, or indeed if, I’d ever be able to walk again and function without round-the-clock care. It was a fear I hope to never experience again.
I’m an extreme case, yet I would still choose to treat my aggressive MS with that equally aggressive treatment. Lemtrada may have caused a few extra battles, but it’s certainly winning the war.
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