Local woman first to receive MS drug

MILFORD – Kani Nicodemus was leading an early morning spinning class at Hampshire Hills Athletic Club when she got a message that could change her life.

The message she received Friday, April 7, was from her doctor, telling her she was chosen to be the first person in the world to receive a breakthrough drug in the treatment of multiple sclerosis, a disease she’s been living with for 17 years.

The drug is the first therapy specifically approved to treat the kind of MS Nicodemus has – primary progressive MS – a chronic, incurable disease of the central nervous system, with symptoms that can include double vision, blindness in one eye, muscle weakness or trouble with coordination.

So, on April 10, Nicodemus sat in a neurology center in Wellesley, Mass., and made medical history as a news crew from WCBV, the ABC affiliate out of Boston, filmed the infusion of the new drug, Ocrevus.

In March, the federal Food and Drug Administration approved the drug, and last week, Nicodemus spent 21/2 playing “Words With Friends” on her phone as the drug was slowly injected into her body.

This isn’t the first time Nicodemus, who is a certified yoga instructor, has made news. A couple years ago, Genentech, the maker of Ocrevus and other MS drugs Nicodemus takes, flew her to Arizona to make a video of her doing yoga.

The fitness instructor lives in Milford and works as a pension-plan communications analyst, but many know her from her 5:30 a.m. spinning classes.

When Hampshire Hills’ staffers learn of club members who have MS, they tell them about Nicodemus, and she is glad to talk to them.

People sometimes think the diagnosis means they shouldn’t exercise, she said. But spinning, yoga, Pilates, horseback riding, swimming and strength training can be good for MS patients, and all can be done at different fitness levels, she said.

Nicodemus, 50, was diagnosed with the disease when she was 33. It disrupts communication between the brain and the rest of the body, and is believed to occur when the immune system attacks the insulation around nerve fibers. It is the most common autoimmune disorder affecting the central nervous system.

In 2013, about 400,000 people in the United States were affected. Primary progressive MS only affects about 10 percent of people with MS, but it has a big impact on physical ability, which Nicodemus noticed had been getting worse.

At one time, she was able to teach kickboxing, step aerobics and other fitness classes, but a weakness in her left foot means spinning is the only option, since on a bike, she can favor the foot it if gives her problems.

Nicodemus will be going for injections every six months, and she says knows the new drug isn’t a cure and can’t repair damage already done to her nerve cells. One of the drug’s side effects is an increased chance of breast cancer, a disease she was treated for in 2013. She is working with her doctor to keep closer tabs on her breast health.

But Nicodemus is upbeat and optimistic, and she thinks the news will give encouragement to other people with MS.

“I read about a woman in a wheelchair who, after her second dose, was up and walking,” she said. “It’s amazing. It’s so incredibly hopeful for her.”

Cyndi Zagieboylo, president and CEO of the National MS Society, called the drug “a real game changer” on the society’s website on March 31.

Nicodemus has shared the news on an open Facebook page.

“It’s important to me to get the information out,” she said. “Whether it will work for me or others with PPMS, only time will tell, but it is an option that wasn’t there 2 1/2 weeks ago.”

Kathy Cleveland can be reached at 673-3100 or kcleveland@cabinet.com.