Fighting Fire With Fire: The War Between Lemtrada and My MS

Beth Ullah avatar

by Beth Ullah |

Share this article:

Share article via email
overcoming ms | Multiple Sclerosis News Today | numbness | optic neuritis | main graphic for

“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.

Recommended Reading
alcohol and risk of multiple sclerosis | Multiple Sclerosis News Today | drinks illustration

Beer Consumption May Be Linked to MS Risk: Meta-analysis

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.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Cori Mcdermott avatar

Cori Mcdermott

I am on lemtrada too. It is wonderful!! So far.....

Reply
Beth Ullah avatar

Beth Ullah

It truly turned my life around! I hope yours continues to be! :)

Reply
Ed Tobias avatar

Ed Tobias

I'm glad to hear Lemtrada has helped, Beth, even if only a little bit. When I started my treatments I'd already been living with MS for over 35 years. Now, it's been over five years since my first Lem treatments. Was it a miracle medication for me? No, but I do think it helped slow my progression and also helped my symptoms a bit - particularly bowel and bladder.

The first 6 months after Round 1 were a real roller coaster, particularly with fatigue. Round 2 was easier. Like you, I'm glad I did what I did.

Ed

Reply
Beth Ullah avatar

Beth Ullah

Well, I knew that a fight was needed. I wasn't going to let it win.
Do you ever start a column with an perspective in mind and it turns into something different? This was one of those for me. My fingers typing just seemed to know what they wanted to say.
And, Ed, when I say lemtrada is winning, it's a whole lot more than a little bit. For my mental health especially.
Beth

Reply
Ed Tobias avatar

Ed Tobias

Yes, I do...and usually it occurs when I'm giving the column a check right before deadline. :-)

BTW, I've written six or seven columns about my Lemtrada journey, providing a pretty good view of my roller coaster ride. I'm glad Lemtrada is winning with you.

Ed

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.

Questions to Ask Your Doctor If You’re Newly Diagnosed

Illustration of doctor an patient talked
We consulted some of our community contributors at MS News Today and came up with 12 questions people should consider asking their doctors after an MS diagnosis.

Check it out by clicking here.

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These audio news stories give our readers an alternative option for accessing information important for them.

Listen Here