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

A former Army medic praises the links in the care chain that may lead to a cure

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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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.

Comments

Matthew Klein avatar

Matthew Klein

Most DMTs not available for PPMS or SPMS is monetary.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Matthew! That's probably why there's not a drug just for PPMS or SPMS.

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Beth Agosta avatar

Beth Agosta

I don't have relapse of my rrms anyway so for me, paying up to my out of pocket max of $2900 with no change in my health just wasn't worth it. It doesn't help with brain fog type symptoms so I stopped taking it after 3 1/2 years. I do just as well by eating whole food plant based with limited salt and even less oil. And staying active. B ut I'm g;ad it works noticeably for you.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Beth. In my circle of MS friends, we call getting off a DMT, "going naked" and a lot of those folks whose MS is stable and remains that way, do it.

If you decide to use that term, get ready for people to be shocked until you explain.

Ben

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Bram Platel avatar

Bram Platel

Thanks for the post Benjamin.
Coincidentally, yesterday I was arguing with the Dutch MS society about them calling MS-medication "remmende medicatie" (slowing down) instead of using the proper term "modifying". The terms are similar, but not the same.
I asked ChatGPT to explain the difference (as one does nowadays):
ChatGPT:
"In this context, "remmen" and "modificeren" do not have exactly the same meaning, but they are related.
"Remmen" can be translated to "inhibit" or "slow down", which refers to the medication's ability to slow down the progression of the disease.
"Modificeren" can be translated to "modify" or "alter", which refers to the medication's ability to modify the underlying disease process or immune response that contributes to the development of multiple sclerosis.
So, while the two terms are not identical, they are closely related in the context of disease-modifying medication for multiple sclerosis."

I think it is important for people to understand that even though the current MS medications do not halt or reverse MS, they do more than just slow down disease progression. Indeed, they *alter* the course of the disease.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Bram! I like that, "alter the course of the disease". I think I'll use that in the future.

I wish it was "reverse" instead, but I'll just need to be patient.

Thanks for the comment,

Ben

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