Mastery over MS

Steve Alden had noticed the odd occurrences for years—his constant fatigue and lack of depth perception, his tendency to trip, that strange tingling sensation in his fingers. And how words were starting to elude him, especially adjectives.

Alden was diagnosed with Secondary Progressive Multiple Sclerosis, or SPMS, in 1995, when he was 43. It’s an advanced stage of MS, but Alden wonders whether all those symptoms meant he’d had an earlier form of MS for years.

Having SPMS is difficult enough, but here’s the kicker: No available drug specifically treats this stage of the disease. Medications administered for earlier stages are not always effective. But that may change.

Double-blind for twice the control

Saint Luke’s Neuroscience Institute is now testing a new drug designed specifically to delay the progression of SPMS. Alden is one of the participants in the trial, which is known as MAESTRO. What he doesn’t know is whether he’s actually getting the drug or a placebo.

Neither do the other members of the trial team, including Christine Boutwell, M.D., the Saint Luke’s investigator for the trial.

“It’s a double-blind trial,” Dr. Boutwell explained. “Neither the participant nor the doctor knows. That makes it a more rigorous scientific study.”

Trial by hope

The test drug is designed to prevent the patient’s immune system from attacking itself.

“Most MS patients have the relapse-emitting phase of the disease,” said Dr. Boutwell. “But after about 15 years, 50 percent of patients will develop SPMS. The medication that can reduce the number of relapses doesn’t work on SPMS because the patients aren’t having relapses.” That’s why so much is riding on the success of the MAESTRO trial.

For Alden, the trial has meant the chance for a treatment that might offer some relief from his symptoms—the nerve pain that no one can see but he can acutely feel, to the point where even the hair on his legs hurt.

But there’s another reason why he wanted to be part of the trial.

“It was a choice of either progressing with no hope or taking some action,” said Alden. “This is a one-in-50-billion chance that I might be able to help other people with MS.”

No cane; now he’s able

Alden is one of 510 patients taking part in the nationwide two-year study. He comes to Saint Luke’s for an IV infusion every six months. He received his first infusion in January 2008; it took all of five minutes.

Alden had already decided he wouldn’t dwell on whether he was actually getting the drug or the placebo.

“MS patients grasp at any straw that may help them,” he said. “I purposely have not done any research on the drug, so that whatever I feel after an infusion, I actually feel. It’s not just something I read.”

Within two weeks of his infusion, Alden did feel a change.

“My balance got a lot better in a hurry,” he said. “I felt like I didn’t have to be close to the wall.”

Before that, Alden’s precarious balance had meant he wouldn’t walk without his cane, and he wouldn’t walk down stairs. Instead, he would sit on the top stair and slide down the rest.

Among the first walks Alden took after his January treatment was with Sugar Bear, one of three dogs in the Alden household. For once, only Sugar Bear was tethered, on her leash; Alden left his cane at home.

Now he’s not even sure where he put his cane, it’s been so long since he needed it. He’s walking where he wouldn’t have dared to walk before, and at a faster gait.

As for stairs, “I now walk up and down them, and I use both legs,” he said. Tracie Dobbie, R.N., B.S.N., sees—and hears—a marked improvement.

“He’s more confident now in his walk,’ said Dobbie, the clinical coordinator for the trial. “Cognitively he’s sharper, too. He follows conversations well.”

Beginning of a happy ending?

When Alden had to quit his job as a respiratory therapist because of his MS, he became a volunteer at a local animal shelter. He brings many dogs into his and his wife’s home in Raytown, socializing them so that they’ll be more readily adoptable.

“There are a lot of happy endings,” he said.

Perhaps the same will hold true of the MAESTRO trial.

In the meantime, Alden happily continues to be a “trial rat,” as he describes himself. (As an adjective, the word might be “hopeful.”)

“If patients are concerned about being in a drug trial, they need to remember that any medication they’re on that’s helping them had to go through trials, too,” Alden said. “As a trial rat, I feel I’m doing some good for somebody.”

Including Steve Alden.