Our treatments for multiple sclerosis aren’t cures, but vital time-buyers

Note: This column describes the author’s own experiences with Ocrevus (ocrelizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Tomorrow morning, I’ll have my 13th infusion of Ocrevus (ocrelizumab). I’ve been approved for the fast infusion rate, so the block of time I devote to it is roughly half of what it could be. With the pre-infusion lab work, premedication, and post-infusion observation, however, it still takes up a large chunk of my day.

The infusions are given every six months, so half a day scheduled twice a year is a small price for me to pay. Besides that, I’ve been satisfied with Ocrevus.

When I was diagnosed with multiple sclerosis (MS), I was initially treated with medications for relapsing-remitting MS (RRMS). When my diagnosis changed to primary progressive MS (PPMS), no approved treatments were available. After almost two years of being without a disease-modifying treatment (DMT), I was given my first infusion in 2017, soon after Ocrevus was approved by the U.S. Food and Drug Administration.

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My first MRI afterward and all subsequent ones since have shown no new lesions and no enhancing ones. My disease progression seems to have stopped, but unfortunately, my disability continued to progress. With no way to heal (remyelinate), some of the demyelinated white patches on my MRI eventually die and become known as black holes.

Ocrevus is a disease modifier, but it isn’t a cure. MS is slowed or halted, but not eliminated. The damage is done, and short of a remyelinating therapy, I may not get any better. In the meantime, the hope is that I won’t get any worse. With that goal in mind, Ocrevus seems to be an excellent time-buyer.

I’m familiar with buying time from my work as a former Special Forces medic in the U.S. Army. Over the years, I’ve treated a lot of routine illnesses and injuries. I’ve also been on site for some major trauma, but I don’t know that I ever saved anyone’s life.

My reputation is at stake, so I’d better explain. I didn’t always have the most charming bedside manner, but I was good at what I did. In a life-or-death scenario, what I did was buy time.

It’s not false modesty, probably just semantics. Stabilizing a casualty so the injured person survives long enough to reach a lifesaving surgery or other treatment is vital. You could rightly argue that it’s the all-important first link in the chain to full recovery. My role was giving someone time to reach the end of that chain.

In a way, Ocrevus, other DMTs, and medications we take for the relief of symptoms are all buying us time. They’re not cures or the means to repair damage. They’re that first link in the chain, stabilizing us until we reach a definitive treatment.

Medics have a dark sense of humor. I’d tell my teammates that if they ever opened their eyes and saw me leaning over them, they were about to have a bad day. Later, one told me that although he didn’t appreciate me telling him to shut up and hold still, opening his eyes to me made him feel that everything was going to be OK.

I don’t know that everything’s going to be OK, but I’m grateful for the time Ocrevus is buying me. I’m grateful for the symptom relief provided by other medicines. I’m even grateful for my team of occupational and physical terrorists — I mean therapists.

I’m grateful for all that, but I’m impatient to reach the last link in the chain — a cure.

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.