Trevis Gleason has a clear memory of the day he was first diagnosed with multiple sclerosis (MS) in 2001. His doctor sent him home with a huge binder of information on disease-modifying therapies (also called DMTs, disease-modifying treatments, or disease-modifying medications).
DMTs are a key component of comprehensive MS care, and they're currently the best options available to slow the natural course of the disease, according to the National Multiple Sclerosis Society.
Back when Gleason, now 53, was diagnosed, there were only three DMTs available to treat MS. He was told to read through all the information provided and pick the one he wanted to be on. Going through the material was time-consuming and confusing, as many of the drugs came with potentially serious side effects ranging from flu-like symptoms to a risk of developing heart or liver problems. In the end, Gleason, who splits his time between Ireland and Seattle, decided his best option was an interferon beta-1b treatment (more on that in a few).
While it’s been nearly two decades since Gleason’s experience, many MS patients can still relate to the plight of deciding which DMT is best for them. And now, instead of three options, there are 17 approved by the U.S. Food and Drug Administration (FDA). Which is great...but also a little dizzying.
The MS community has seen many advancements in the last 10 years, says Eoin Flanagan, M.B., B.Ch., a neurologist with the Mayo Clinic who specializes in MS. “We’re doing better in terms of having a lot more choices available, but that can make it difficult to navigate the lineup of so many different medications,” he says.
That’s where this guide can help.
The Goal of DMTs
It’s important to know that DMTs aren’t meant to treat current MS symptoms (such as fatigue or numbness). Instead, the goal is to decrease the overall number of relapses you experience and to slow the accumulation of lesions in the central nervous system, Dr. Flanagan explains.
While using DMTs can’t “fix” the damage MS has already done, these medications are meant to help prevent or limit damage in the future, adds Kathy Costello, M.S., C.R.N.P., associate vice president of healthcare access with the National MS Society.
“It’s like taking out an insurance policy,” Costello says. “You want to give yourself the best chance of living your best life with MS.”
But before you pick your “policy,” there are many things to consider, including potential side effects. That’s why it’s so important to play an active role in deciding which DMT is right for you, Costello says.
“If you’re newly diagnosed with MS, not only is this disease brand new to you, but now you’re faced with a decision about being on a very powerful drug, potentially for the rest of your life,” she says. “The person living with the disease needs to think about their goals and their risk tolerance. They need to do their homework in understanding these therapies so they can have a real conversation with their doctor.”
There are two main questions Costello encourages people to consider and discuss with their healthcare provider:
- What should I expect from the disease-modifying therapy?
- What are the side effects, and how should I manage them?
It may take multiple conversations with your doctor before you make a decision—and that’s fine. Together you’ll decide on the treatment that’s best for you. Each person’s body or disease can respond to these medications differently, plus a medication that adequately controls your disease today may not do so in the future.
The good news: You have options. Here’s what you should know about the primary types of DMTs.
First-Generation Injectable Treatments for MS
Some of the first DMTs were approved by the FDA more than 20 years ago. Examples include:
Some of these older medications are not as strong as more recently approved DMTs, Dr. Flanagan says. Even so, some patients prefer them because they’ve been around the longest, so their benefits, side effects, and risk factors are well known, he says. Plus, these medications tend to have milder side effects for some people.
The downside: First-generation DMTs may not have the potency to help patients who are dealing with multiple MS attacks per year. If you have active MS with lots of inflammation showing up on your MRI, you may require newer-generation meds, Dr. Flanagan says.
Another issue is that these older DMTs require self-injection, either under the skin or in a muscle, which can cause bruising and discomfort at the injection site.
Holly Hill, who was diagnosed with MS in 1988, began using Betaseron not long after it became available, but the injections left her with horrible bruising. She then switched to Avonex, which despite also being a self-injection DMT came with few side effects, she says. Hill stayed on it for about 15 years, injecting herself with the medication once per week with few problems.
Oral and Infusion-Based Medications for MS
Oral medications are among the newer DMTs available. They may be seen as more convenient and appeal to patients who experience side effects from the injections, Dr. Flanagan says.
Examples of medications that can be taken by mouth include:
There are also infusion-based medications, which are given intravenously at a medical facility. An infusion-based DMT is delivered through IV directly into a vein and doesn’t need to be administered as often as self-injection medications.
Examples of infusion-based DMTs include:
Newer DMTs: The Risks You Need to Know
While most patients tolerate newer medications well, they do come with a greater risk for side effects and infection, Dr. Flanagan says. As a result, doctors will monitor patients who are on those medications more closely.
One such side effect is called progressive multifocal leukoencephalopathy (PML), a serious and potentially fatal brain infection that is triggered by a virus called John Cunningham virus (JC virus) that more than 60% of adults have been exposed to, Dr. Flanagan explains. The virus usually remains dormant in healthy people, but because some DMTs alter how a person’s immune system functions, in rare cases, the virus can be re-activated in those who use DMTs.
People who take the infusion-based medication Tysabri seem to be at the highest risk of developing PML. Because of this, before a patient is ever prescribed this drug, they are tested to see if they’ve been exposed to the virus, Dr. Flanagan says.
“For those who have been exposed to the virus, we try not to use that medication,” Dr. Flanagan says. “But if you’ve not been exposed, it’s generally safe, and we monitor the blood counts to see if you’ve become exposed to the virus over time.”
When to Switch Your DMT
There are a number of reasons why patients might switch off one DMT or try a new medication, Dr. Flanagan says. For instance, if you’re continuing to have new relapses and new active lesions are appearing on your MRI, the medication is likely not working for you.
“Alternatively, if patients develop side effects and just don’t tolerate the medication—they get abdominal pain, for example—then we might switch to a medication of a similar strength, hoping that they won’t get those side effects with the new medication,” Dr. Flanagan says.
Like Holly Hill, some patients may decide it’s time to switch medications as their MS progresses over the years. After being on Avonex for so long, Hill decided to try one of the newer oral medications. She’s since been on Tecfidera), which is a tablet taken twice daily.
“I’ve tolerated that very well,” Hill says. “I’ve had no side effects at all.”
DMTs and MS: What You Need to Know About Pregnancy
None of these medications is approved by the FDA for women who are pregnant, plan to become pregnant, or who are breastfeeding, according to the National Multiple Sclerosis Society. If that’s you, talk with your healthcare provider to determine the best and safest treatment plan.
There are certain drugs, such as Aubagio, which should be avoided if you plan on becoming pregnant in the future, Dr. Flanagan says. These medications may cause malformations in a fetus and may stay in a woman’s system for a year or two, even after she stops taking it, he says.
The Bottom Line
All the disease-modifying therapies described above have been shown to be effective in treating MS. The key is working with your healthcare provider to find the one that offers the greatest benefit for you at this time--and monitoring your results in case it’s not working for you.
“I think there’s a medication out there for each patient, but it’s important to look at the whole situation and take all the factors into account,” Dr. Flanigan says. Once you do, you’ll be able to make a decision that is right for you.