10 Things You Don't Know About MS Treatments

While a lot of DMTs have recently entered the market, the meds aren’t necessarily new in the sense of a breakthrough treatment approach. “Every other year, we have a new MS medication that’s being approved,” says Daniel Ontaneda, M.D., a neurologist at Cleveland Clinic’s Mellen Center for Multiple Sclerosis in Ohio. But these medications, he says, actually “work on the same mechanism of action, they just target better tolerability or refine the mechanism to make sure that they work better in a specific MS patient.”

When it comes to treatment, the fact remains that the advent of DMTs has forever changed the way we think about MS. Prior to DMTs that halt disease progression, wheelchair life was common among patients, says Kathleen Costello, a nurse practitioner and adjunct assistant professor at the Johns Hopkins School of Medicine in Baltimore. Not so in 2020, although “there’s a vast heterogeneity to this disease and a wide spectrum of disability for people living with MS,” she says.

DMTs are not cheap. The median price for the medication was $88,000 in 2019—and that amount is expected to rise in 2020. With prices so high and health insurance not always fully covering the drugs, cost can be a real impediment to people getting the treatment they need. A 2020 survey by the National Multiple Sclerosis Society found that 40% of MS patients altered or stopped taking their DMT because of the high cost. That’s a problem, since consistency is essential for the drugs to work effectively.

Many people don’t realize they have options if their insurance company denies coverage for certain MS treatments. If you’ve been turned down for a new drug therapy, talk with your doctor about ways to defray costs, says Dr. Ontaneda. For instance, some pharma companies making DMTs offer patient assistance programs. Nonprofit organizations may also help cover costs. Don’t let your insurance company take you off your game: Delayed treatment can result in disease progression.

To maximize the benefits of your meds, you need to take them exactly as directed by your doctor. That might mean setting a reminder in your cellphone calendar, putting stickies on your fridge, or asking your partner to ping you so you don’t forget. “These drugs are based on a certain dosing regime, and if someone is not following it, we really have no idea if the drugs are going to work as well,” says Dr. Ontaneda. “Adherence is key to optimizing the drug's effectiveness.”

Here’s something you might not know if you’ve been on the same disease-modifying therapy for a while—the side effects of your DMT might be totally different than those for another MS medication. “Side effects vary heavily by different medication types,” Dr. Ontaneda says. The good news is, if the adverse effects of your current treatment are getting to hard to handle, another drug may be able to offer the same symptom relief, minus the uncomfortable sideshow.

Maybe you know someone on a certain DMT, and they’re doing really well. That’s great! But there’s no guarantee that what works for them will work for you, says Costello. For reasons docs still don't totally understand, some meds work better for certain people. “That’s the importance of having more than one treatment with different mechanisms of action, different routes of administration, and different side effects,” Costello says. “Each person’s individual situation can potentially be met by one of these drugs.”

Turns out, DMTs are limited in whom they can benefit: They’re generally only effective for people with relapsing-remitting MS (RRMS), leaving those who have progressive MS with few treatment options. “People with primary-progressive MS are not having relapses, so they aren't able to participate in a clinical trial for these types of therapies,” says Costello, who calls the U.S. Food and Drug Administration’s approval of Ocrevus (ocrelizumab), the only drug available to treat primary-progressive MS (PPMS), “a very important breakthrough.”

If you have MS, you’re well-aware that there is no cure… yet. But there is plenty of reason to feel optimistic about the future. Researchers are coming at the disease from all angles, including investigations into stimulating re-growth of the myelin sheath (protective tissue that surrounds your nerves). “Ultimately, the goal is to literally prevent this disease from happening,” says Costello. “Until then, it’s very important to continue to advocate for additional research to better understand what happens when MS progresses.”