Fighting multiple sclerosis in the Vail Valley

VAIL, Colorado — Snowmass resident Jennifer Rupert noticed something was wrong shortly after she stopped breastfeeding her son, Jack, last August.

One weekend, her foot felt warm, as if there was Gold Bond in her sock. By the Monday after, she had lost sensation in her abdominal band.

Then at martial arts class, Jennifer kicked and her toes failed to pull back.

“That’s when I knew something was different,” she said. “Alright, the message didn’t get from my brain to my toes. What’s going on?”

Jennifer’s primary care doctor in Basalt referred her to Weiss & Newberry Medical Associates, a neurology practice in Vail, where a spinal tap confirmed that she had multiple sclerosis.

“Oh my God, you’re so scared,” Jennifer said. “My first thing was: Would I see Jack’s graduation? It’s almost been a year now but just remembering the fears of that week — I had only gotten married the year before and then got pregnant on my honeymoon and had Jack and was diagnosed with MS.”

The neurologist suggested Jennifer take a relatively new drug called Tysabri. Since she began taking the drug, Jennifer, 36, hasn’t suffered any more attacks.

“The way I feel now, I wouldn’t trade it,” she said. “I wouldn’t stop taking it now. What this drug does is allow the body the opportunity to heal and the opportunity to fix itself. I guess all I can say is it made my life normal again.”

Big implications

Two thirds of patients who have taken Tysabri through Weiss & Newberry have experienced improvements in their condition, Dr. Gary Weiss said.

In one case, a patient confined to a wheel chair was able to walk again, he said. And in 95 to 98 percent of patients, the drug has stopped the worsening of MS.

Weiss has treated about 100 patients with the drug. For the past six months, he has been conducting a study on the efficacy and possible side effects of the drug.

If Tysabri continues to perform this well, the implications for patients could be huge.

“MS doesn’t have to be a disabling disease,” Weiss said. “It doesn’t have to change their lives and that would be a huge step.”

Multiple sclerosis occurs when the immune system attacks the myelin — the coating around the nerve cells — in the brain. A vast array of symptoms can include blurred vision, partial loss of vision, dizziness, memory problems, seizures, stiffness in the arms or legs and pain.

Without treatment, multiple sclerosis progresses with a series of attacks such as blurred vision or paralysis. Although function often returns to the problem zones, most of the time patients only get 70 to 90 percent of their function back in the affected areas.

“The scary thing for patients is you never know when an attack’s going to come,” Weiss said. “You can have blurred vision three times and then the next time you can be paralyzed from the waist down. You never know when it’s going to come, what it’s going to involve or how severe it is, and that’s a tough way to live. There’s a lot of uncertainty.”

In that context, the possibility of a drug that can stop attacks and help patients improve is a big deal.

“What’s exciting about Tysabri is that it’s a huge breakthrough,” Weiss said. “In the past, before 1991, there were no drugs for MS that really helped. None. Doctors got a little bit, almost lazy with diagnosing MS because: Why diagnose someone with MS when you can’t do anything for them?”

In the early 1990s, four drugs emerged that slowed the worsening of MS but they had side effects and only worked about two-thirds of the time, Weiss said. Those drugs fought MS by modulating the immune system. The problem: Patients felt like they had the flu for two or three days after each treatment, which could be as often as once a week.

“They are like a shotgun approach affecting your whole immune system,” Weiss said. “So that’s why you feel like you have the flu when you take those medicines.”

Tysabri is more targeted. Multiple sclerosis occurs when white blood cells claw their way through the blood-brain barrier using fingerlike projections. Tysabri “puts a mitten” on those projections, stopping white blood cells that don’t belong in the brain from getting in, Weiss said.

“Because of that it has very little side effects,” he said. “In other words, that white blood cell can still work if you get a kidney infection or a lung infection. It still works just fine. We’re not changing how the whole immune system works, we’re just keeping these white blood cells that shouldn’t be in the brain from being able to get into the brain.”

A local study

Presently, about 20 patients are enrolled in the study at Weiss & Newberry. Doctors expect a total of 25 to 50 patients to sign up. The study will be completed in two-and-a-half to three years, Weiss said.

Patients who are enrolled in the study receive Tysabri treatments once a month through an IV. They undergo detailed monitoring, including an MRI ever six months and a neurological exam every three months. Patients also fill out questionnaires and undergo interviews with nurses about any side effects and improvements.

Weiss & Newberry is participating in a larger study through Biogen Idec, the company that makes Tysabri. About 25 to 50 neurologists likely will participate in the study, Weiss said. Weiss & Newberry receives about $25 from Biogen to cover the cost of paperwork associated with the study and patients receive a small payment of about $25 from Biogen for participating, Weiss said.

There are risks associated with participating in the study. Because the drug is relatively new, the long-term side effects remain unknown, Weiss said.

There is also a slight risk of getting a rare but potentially fatal brain infection. Tysabri initially hit the market in 2005 but the drug company took it off the market for two months before re-introducing it in summer of 2006, Weiss said.

The drug disappeared briefly because 2 out of 2,000 patients involved in one study developed a brain infection, he said. However, those patients had also been taking an interferon drug. So far, none of the 30,000 people taking Tysabri alone have developed a fatal brain infection, Weiss said.

Double the national average

The study could have interesting implications for mountain towns, where the rate of MS is higher than the national average.

“One of the things about MS is it is more prevalent in temperate climates, the colder climates,” Weiss said. “The relevance here is even greater than in those temperate climates.”

Nationwide, studies show the prevalence rate for MS to be between 2 and 150 per 100,000 people, depending on which area and how each study is designed, Weiss said. The Mayo Clinic estimates that 300,000 Americans have MS for a rate of 100 per 100,000 people.

Conservatively, there are more than 100 patients with MS in Eagle County which would equate to at least 200 per 100,000 population — double the national average, Weiss said. A full study of the mountain population including an accurate number has not yet been published, he said.

The cause of multiple sclerosis remains a mystery but researchers theorize that a pair of viruses trigger the disease. A theory suggests that one virus strikes before the age of 15, causing a person to be susceptible to MS, and then another virus hits later in life, causing a person to have MS, Weiss said.

“We can see there’s a different rate based on climate,” he said. “Some viruses live better in colder climates. It kind of makes sense that here in the mountains, it’s cooler. You have some viruses that live here. It mainly depends on where you lived the first 15 years of life, if you grew up in a high prevalence area.”

High Life Writer Sarah Mausolf can be reached at 970-748-2938 or smausolf@vaildaily.com.