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Why I'm Struggling to Match My Friends' Enthusiasm About a New Drug

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“Is the MS drug news good for u?,” my friend’s text asked. It was Wednesday morning, March 29th. Genentech had just announced that Ocrevus, the “first and only approved disease-modifying therapy for primary progressive form of multiple sclerosis (PPMS) – one of the most disabling forms of multiple sclerosis (MS)” had been approved by the United States Food and Drug Administration (FDA).

My friend and her family are among my biggest advocates and supporters, and in their way, cheerleaders. “The shortest answer is maybe,” I wrote back. “But maybe is a far better answer than no.”

Early the next morning my neurologist called. My wife was running late and I was trying to help her fly out the door. One of our cats was in a pet carrier, howling as she waited for me to take her to the vet. I was in the eye of the tornado and it wasn’t the best time to talk. But his call was unexpected and it was my neurologist.

“Did you hear the news about Ocrevus?” he asked. By then I had watched the drug’s long progression from potential breakthrough to its approval for use here in the United States. For the past year I’d pestered my neurologist to determine if I would be a candidate for the treatment and we had talked about it several times. His call shouldn’t have surprised me. “You were at the top of my list to call to see if you wanted to set up an appointment to come in and talk about the pros and cons of the medicine.”

Two days later the lawyer handling my Social Security disability application called and left a message asking if I’d heard about “a miracle drug’s approval for treating multiple sclerosis.”

My journey with MS began in 2001. I was 41 years old then and training for what I had hoped to be the first of several marathons in my life. Ever so gradually I developed a gate problem that ever so gradually made it impossible to run. Today I need a cane to walk and am shopping for a walker. I wrote this column using voice to text technology because motor loss in my right hand has rendered it useless for typing.

There were plenty of warning signs and seemingly disparate illnesses over the ensuing years but I wasn’t diagnosed until December 27, 2013 when connecting what were, in retrospect, classic MS symptoms became impossible to ignore. Though I had very few episodes that might be considered exacerbations or flare-ups, in the spring of 2014 I received medication meant for relapse-remit MS patients. Months later I spoke with my neurologist again, complaining that nothing was changing. “It may take a while before you notice the effects,” he said.

But I continued to get worse. Today my neurologist and I have come to agree that mine is a progressive form of MS. It just went unrecognized for so long that the marked debilitation I’ve experienced over the past three years seems comparatively sudden.

By now I understand that MS is different for everyone, that its arc and progression are unpredictable and the only thing that is predictable is the disease’s chaotic nature. So I’ve learned to become cautious and guarded about everything associated with MS, taking everything with many grains of salt. Truckloads of salt.

Nearly everything MS is doing with me is out of my control, except for trying to take care of myself, which isn’t. I attend a weekly Pilates session with an instructor trained to work with MS clients. Though it’s very awkward, I continue to ride my bicycle and work out several times a week. We get together with friends and go out as frequently as we can even when I don’t feel like it. Sometimes when I don’t want to do those things I think of them as an obligation to those who are supporting me, who inquired excitedly to ask if I’d heard the news, and who asked if Ocrevus is going to help me. Because they need to know I am not giving up.

They’ve lived this disease with me and and the news about Ocrevus has left them enthusiastic. They need to be enthusiastic in order to keep slogging this out. Yet I am skeptical about Ocrevus because of my history with MS and because there’s much left to know about the drug. I am also afraid of the massive letdown we may all experience if it doesn’t work.

For everyone’s sake, I am trying to be enthusiastic and have faith that they’ll be there for me even if Ocrevus doesn’t change anything for me. I’m scheduled to meet with my neurologist within the week. If we’re going to do this, I know we’re going all in and I know we’re going all in together.

This post originally appeared on MS News Today.

Follow this journey on Mike Knight Writes.

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Thinkstock photo via Sukiyashi.

Originally published: May 5, 2017
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