Weighing the benefits, risks and side effects of each MS medication goes a long way toward finding the right one for you.
by Donna Shryer
Choices, choices. That could be the mantra when it comes to finding the best disease-modifying treatment (DMT) for your multiple sclerosis. Today, people diagnosed with relapsing-remitting MS have 10 DMT options, all approved by the U.S. Food and Drug Administration to slow the progression of MS, prevent relapse and help people with the disease live more active lives. It’s a far cry from just 20 years ago, when no treatments were available.
People newly diagnosed with MS—or considering changing their treatment—can now weigh not just the efficacy, safety, risks and side effects of each DMT, but also the method of administration. DMTs today are available as injections, infusions and oral medications, allowing people to choose how, when and where to take their medication.
The menu of options
Five medications are injectables, or shots that people give themselves (either under the skin or into a muscle) on a schedule that ranges from daily to weekly. Four of these injectables—Betaseron®, Avonex®, Rebif® and Extavia®—belong to a class of medications called interferon betas. The fifth injectable, Copaxone®, is made of a synthetic protein called glatiramer acetate. Injectable therapies have been available for more than a decade, giving the medical community time to collect a significant amount of clinical evidence that demonstrates the drugs’ safety—which is why these medications are often referred to as frontline MS treatments. The other therapies have all received FDA approval for safety and efficacy, but they don’t have similar long-term usage data.
Two medications—Novantrone® and Tysabri®—are administered by intravenous infusion. This requires a visit to a medical facility, but treatment is needed only monthly or quarterly.
In 2010, the FDA approved Gilenya®, the first oral medication to treat MS, and two additional pills have since become available: Aubagio® taken orally once a day, and Tecfidera™, taken orally twice a day.
Each DMT works differently in the body to limit the damage caused by MS attacks. In addition, each has a different profile of risks and side effects and a different degree of effectiveness at slowing the development of new brain lesions, reducing exacerbations and slowing disability progression. In general, the newer drugs bring both greater efficacy and greater risk.
As people learn about new medications on the market or promising treatments being tested, they sometimes feel confused or overwhelmed, says Fred Foley, PhD, director of neuropsychology and psychosocial research at the Holy Name Hospital MS Center in Teaneck, N.J.
“There are few head-to-head trials and therefore no science-based answers that say which drug is superior for a particular symptom profile,” Dr. Foley says. And considering the additional factors besides efficacy can add up to information overload. At the end of the day, Dr. Foley adds, it comes down to deciding what fits best right now—with the awareness that your needs may change over time.
More power to you
“There will be valuable input from your healthcare team, family and friends, but it’s important to feel that you’re in charge of your disease,” Dr. Foley notes. “It’s how you achieve what we call MS self-efficacy—the expectation that you will overcome challenges when they happen. Be an active participant. Ask a lot of questions, speak up if side effects are unbearable, and be fully engaged in your disease management.”
Empowerment comes more easily with a trusted support network in place, explains Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society. “You want a partnership between the person with MS and his or her doctors, nurses, family members and perhaps a psychologist or social worker,” she says. All of these people look at the treatment process from a different point of view.”
Family support is particularly important when it comes to DMT compliance. Jeannie Saur, a 47-year-old resident of Westminster, Colo., found this out firsthand. Diagnosed with relapsing-remitting MS in 1997, Saur began treatment with intramuscular injections. After seven years she “ran out of injection points,” and moved to subcutaneous injections for the next seven years.
Then she hit a bump in the road. “I was so tired of injections and felt what’s called needle fatigue,” she explains. “Since I was doing great, I made a very emotional decision to stop taking medication. But my husband took a more realistic view and told me, ‘You may feel healthy now, but the fact is you need to stay on your medication to stay healthy.’”
Saur’s husband was right: Even when you don’t have active symptoms, MS can be operating in the background, causing irreversible damage (lesions) to the brain and spinal cord. In fact, lesions occur 10 to 20 times more often than symptoms are felt by a person with MS.
The only time physicians may recommend stopping MS treatment altogether is during pregnancy, nursing or when men or women are trying to conceive. Discuss this with your healthcare team if you’re planning to grow your family.
So, rather than give MS free reign, the Saurs investigated newer oral MS medications and took their findings to Saur’s neurologist for feedback. “We decided an oral therapy was the best fit for me, and it’s been terrific. I’m back in charge now! But to get here, I really needed my small circle,” she says.
Personal preferences should always figure into the DMT decision-making process, says Dr. Kalb. “We want people to get on and stay on their medication, and the only way this is going to happen is if it also fits comfortably into someone’s lifestyle.”
Side effects, for instance, can be a deal breaker when it comes to DMT compliance. Medication side effects can range from mild and annoying to uncomfortable and problematic. For Claire Gordy, diagnosed as an 18-year-old college freshman in 2000, severe flu-like reactions to each interferon therapy she tried sent her straight to bed. Side effects for other DMTs can range from headaches and skin flushing to vision changes.
For milder side effects, Dr. Kalb suggests giving them a month or so to diminish. Then, if they’re not fading fast enough, talk to your neurologist. “Today, with 10 choices, a person with MS can speak up. You no longer have to settle,” she says. “If you find yourself talking to the family doctor or a general neurologist who isn’t comfortable discussing the newer drug options, take charge and reach out to someone who specializes in MS.”
Drug administration method also makes a difference. Some people dislike needles and prefer the convenience of a pill. Others may prefer limiting their MS treatment to a monthly infusion. A full-time parent with young, active children might find an entire afternoon devoted to a monthly infusion impractical. These lifestyle issues count when it comes to follow-through.