Getting Along with Your abcs - Avonex, Betaseron, and Copaxone

Inside MS, Fall, 1999 by Martha King

Avonex, Betaseron, and Copaxone. The new ABCs of multiple sclerosis.

All are approved by the FDA for people with relapsing forms of MS. All are self-injectables. All cut down the number of attacks (or exacerbations) a person with MS would otherwise have. In other words, people using these drugs are acutely sick from their MS less often and for shorter periods. These drugs mean it is, at long last, possible to treat the underlying MS.

Dr. Henry McFarland, chief of the Neuroimmunology Branch of the National Institute of Neurological Disorders and Stroke, sees the face of MS being changed by them. "Early diagnosis combined with early and regular use of one of the new disease-modifying drugs can lead to a more benign course of MS over the long run," he said.

This opinion, supported in part by scientific studies and in part by clinical experience, is shared by the Society's expert medical advisors. They drafted the Disease Management Consensus Statement in spring 1998. [The complete document can be downloaded from the Web at www.nmss.org or obtained by phoning 1-800-FIGHT MS (1-800-344-4867), option #1, and asking your chapter for a copy.]

What's wrong with the picture?

The ABCs have problems. Some surveys estimate that as many as a third of the people who start taking one stop within 2 years. Not to switch to another, more compatible A, B, or C--but to quit altogether.

The studies and questionnaires about this come up with about the same thing. The biggest reason for quitting isn't the needle sticks, the high cost, or the sometimes nasty side effects, though each of these may stop some people. People quit because the drug hasn't made them feel better. When an obvious benefit doesn't kick in, people toss their drug.

There is a logic to it: people who take a medication naturally expect it to make them feel better. And taking the new drug sometimes does. The excitement of a new therapy boosts hope, which is the world's best medicine. The feeling of mastery from learning to self-inject is also a real up, some people say. But soon the users realize that their old MS symptoms still come and go. Eyes still blur, feet go numb, memory takes sudden trips south, or walking across the living room requires the stamina of an Olympic athlete. Then comes the knockout punch. Out of the blue, people who faithfully take their injections have an exacerbation anyway. (Remember, the data show the drug will reduce the number of attacks.)

All 3 of the pharmaceutical companies supplying these drugs try hard to inform people that their products do not cure MS. But their advertising doesn't exactly shout out that a user may still have ongoing symptoms, plenty of frustration--plus an occasional attack.

The real advantages

Advantage number 1 is: A, B, or C are the best MS fighters we have so far. The 3 drugs have not been directly compared in clinical trials, but from the data, the Society's Medical Advisory Board considers them to be about equal in slowing down the underlying MS. None of them is a cure.

Advantage number 2 is: A, B, or C work to slow the hidden disease process. The catch is that this process is, indeed, hidden. The drug may be doing its work while the person who is talking it feels lousy. A, B, and C have all demonstrated they not only reduce the number and severity of MS attacks, they can dramatically reduce the number and activity of MS lesions (or damaged areas) inside the central nervous system.

It turns out that early on MS is almost continually active--in silence. MS specialists didn't suspect this until the advent of MRI (magnetic resonance imaging) in the early 1980s. Today, enhanced MRI, plus an alphabet soup of advanced imaging technologies with names like MRS, PET, and MTR, are uncovering more and more about what MS is doing within the brain. No one who has MS can feel this activity. To make matters more complicated, there is no direct one-to-one correlation between having less lesion activity and having fewer symptoms. Nevertheless, the experts now believe that MS becomes noticeably worse only after the central nervous system has run out of ways to duck, weave, and compensate for central nervous system damage.

As Dr. Barbara Giesser, of Arizona Health Sciences Center, put it, "An A, B, or C drug is a kind of insurance policy against ongoing and future central nervous system damage."

What A, B, or C can't do

Even though people who take A, B, or C have a chance at developing fewer permanent losses, they still have to deal with symptoms. Fatigue, unreliable bladders, poor vision, spasticity, and other problems may even worsen. A, B, or C do nothing for them. Fortunately, there are therapies for managing them. And nothing substitutes for a "wellness" approach to MS, emphasizing good diet, good friends, stress management, exercise, and fun.

Looking for the carrot

New information about "silent" MS includes compelling data about severed nerve fibers. Fear is a powerful stick driving people to take medication. But in the long run fear is a poor motivator. It's the carrots--the positive rewards--that help people stay with a program over time.