A year later, ‘a lot better’

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In 2017, Phil Simon set a goal for himself.

Nothing extravagant. He wanted to visit a Florida theme park with his wife, Jennifer, and their sons, Cole and Avery.

Maybe Disney World.

And he wanted to walk the park like most dads his age, not navigate it in an electric scooter.

The problem was, Simon had already been fighting multiple sclerosis, or MS, for 15 years. Walking had become difficult. His medications no longer slowed the progression of the disease.

“He’s getting worse and he’s tried what I have,” Danita VanderKodde, PA-C, MSCS, a certified MS specialist with Spectrum Health Neurosciences, said in late 2017.

Without a new drug, he could see his mobility, stamina and even cognitive skills quickly decline.

Promise of Ocrevus

Fortunately, a new medical option emerged just when he needed it.

Ocrevus, an intravenous medication administered by twice-yearly infusion, caused a stir when it hit the market in spring 2017. The media hyped it as a breakthrough drug, a game changer in MS treatment.

At the time, VanderKodde, Simon’s specialist since 2005, expressed cautious optimism, calling Ocrevus “one of only a couple MS therapies with proof—statistically analyzed proof—that some people got better over time.”

Ocrevus resists the effects of MS by preventing damage to the myelin sheath covering the nerves of the central nervous system, VanderKodde explained. By protecting the nerve cells from autoimmune attack, the drug gives the body a chance to heal itself.

Early last year, Simon, who lives in Hudsonville, Michigan, became one of the first Spectrum Health patients to get on board with Ocrevus.

A year later, in January 2019, he returned to the Spectrum Health Integrated Care Campus on the East Beltline in Grand Rapids for his third infusion.

As he sees it, the drug has begun to fulfill its promise.

“It’s the best thing I’ve been on so far, for sure,” he said. “My walking’s gotten a lot better. I hobble a lot less … and I don’t get as fatigued.”

VanderKodde noticed an improvement in his walking just six months after his first infusion, she said.

As she and her neurology team colleagues prescribe Ocrevus for more and more patients—the number now totals more than 100—positive outcomes are piling up.

“As a rule, people are doing great,” she said. “Not miracles, but they are walking better when they come in for their second and third infusions.”

No scooter needed

VanderKodde’s favorite thing about Simon’s story is that Ocrevus helped him achieve his vacation goals, she said. This past September, the family visited Universal Studios in Orlando. Simon got around entirely on foot, without even needing a cane.

“It was a fun trip, and I did well,” he said.

“I needed to rest at times, but we made it through. It was a good time.”

With more patients opting for Ocrevus, VanderKodde and her colleagues have kept a close eye on the side effects. No drug is without risk, she said, but Ocrevus seems to have fewer issues than other IV therapies.

“I can say, pretty much, you’re just going to get some itchy ears, maybe a rash—and we’ll take care of it,” she said. “It has gone very well.”

Patients also like the convenience of sitting for a twice-yearly infusion, rather than taking a daily pill or injecting themselves several times a week, she said.

Effectiveness, minimal side effects, convenience—they’re all reasons Simon plans to stick with Ocrevus for the long haul.

“You couldn’t pay me to go back to (my previous drugs) now,” he said.

Attainable goals

Looking to the future, Simon avoids setting lofty goals. His focus is on simple, everyday targets that help him to keep pushing himself.

“I don’t like to just sit idle,” said Simon, a stay-at-home dad and a former chef.

Last year, the family adopted a dog from the Humane Society, a black lab–American Staffy mix named Mustang. He’s a good friend and walking companion for Simon.

“It’s to help me keep moving,” he said. “He walks really well.”

Simon is realistic enough to know that Ocrevus hasn’t solved everything. He still has bad days, especially in the winter, when the cold makes his joints tighten up. And he still feels mentally overwhelmed from time to time.

But his strength is on the upswing, and his bad days are becoming less frequent.

“Hopefully it only gets better,” he said.

“That’s why I’m in it, you know—to buy me whatever time I can get.”

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