If you have multiple sclerosis (MS), you might be wondering if you’ll have to be on medication for the rest of your life. That’s something only you and your doctor can decide together. But some people do choose to stop taking disease-modifying medications for MS for a while. Some even quit their medication for good.
There are several reasons why you might stop taking MS medication. You may feel it doesn’t do enough to ease your symptoms. Or maybe the side effects are too severe, or they outweigh the drug’s benefits. If you relapse while taking medication, you could feel that if it isn’t working, you shouldn’t bother using it.
“Unfortunately, sometimes quitting is even a financial decision because a medication is too expensive, or insurance doesn’t cover it,” says Gabriel Pardo, MD, director of the Oklahoma Medical Research Foundation’s Multiple Sclerosis Center of Excellence in Oklahoma City. (If cost is an issue, your doctor or the National Multiple Sclerosis Society may be able to help.)
If you’ve considered not using your MS medication, here’s what you need to know.
Is It Safe to Stop Taking Medication?
Experts still aren’t sure whether it’s safe to stop MS meds. They do know one thing, though: It’s never safe to stop without talking to your doctor.
“The decision to stop a disease-modifying therapy is a lot like the decision to start one,” says Barbara Giesser, MD, a neurologist and MS specialist at the Pacific Neuroscience Institute at Providence Saint John’s Health Center in Santa Monica, CA. “It requires a thoughtful conversation with your physician.”
That’s true even if you’re worried about medication increasing your risk of COVID-19. “You shouldn’t stop using your MS medications because of the pandemic,” Giesser says.
“Good planning between you and your neurologist is extremely important,” Pardo says. Instead of quitting medication altogether, you may want to try a different one. There are other things to think about, too. For example, stopping some MS meds can lead to an increase in MS-related issues unless you switch to another disease-modifying medication.
What Happens When You Go Off Your Medication?
Your MS symptoms may get worse if you stop taking your meds, especially if :
- You’re under 65.
- You’ve had new relapses or tests that show MS-related inflammation or damage in the past several years.
A 2016 New York University study of 1,339 adults over 40 with MS found that people who chose to stop taking disease-modifying medication had about the same rate of relapse as those who kept taking it. But they had disability earlier than most of the those who stayed on their meds.
Likewise, a 2017 study of 94 people from the Minneapolis Clinic of Neurology found that adults 70 and older with secondary progressive MS (SPMS) only had a 10% increase in their likelihood of MS activity within a 2-year period. But younger adults who had relapsing-remitting multiple sclerosis (RRMS) were 60% more likely to have new MS activity that would put them at risk for being more disabled later on.
One reason? If you have RRMS, using disease-modifying medication may have long-term benefits, especially if you start it right after you’re diagnosed. Medication lessens inflammation and damage in your nervous system. It can also help lower the number of relapses you have. (You might also hear them called “flare-ups” or “attacks.”)
What’s more, medication may help lessen how severe MS-related disability is and how fast it comes on. (Using disease-modifying drugs may have similar benefits if you have primary or secondary multiple sclerosis, too.)
Stopping medication makes it more likely that your MS will come back, Pardo says. “And if you stop taking medication now but have a relapse 5 years from now, we won’t know when the damage occurred. Was it right away, or toward the end?”
“There’s a lot scientists and physicians still need to figure out,” he says.
Is It Ever OK to Take a Break?
MS doctors generally don’t recommend using disease-modifying medications during pregnancy. That’s because they may make health problems more likely in unborn babies. “But even then, you shouldn’t stop without speaking with your physician first,” Giesser says . (If you get pregnant without planning, contact your doctor right away.)
In addition to helping you stop the medication, your doctor will want to come up with a plan for when to start taking it again. Some treatments may be safe to use during breastfeeding, so the doctor may recommend switching to a different drug for a while before returning to the one you were using before you began trying to conceive.
Likewise, if you’re 65 or older, haven’t had any relapses in several years, and don’t want to stay on medication, talk to your doctor about stopping.
“We used to think that MS is a lifelong disease that needs lifelong treatment. But now we’re beginning to doubt that, especially in older and very stable patients,” Pardo says.
But, Giesser says, it’s important to know that if you do so, you may increase your risk of disability.
There’s a lot of guesswork now, but researchers are studying when it’s OK to quit taking medications. “One day soon, we may have more answers and clearer guidelines to help all MS patients,” Pardo says.
