By Kathleen Costello, MS, as told to Rachel Reiff Ellis
Drugs don't work in people who don’t take them. It sounds over-simplified, but it's true. And it’s not an MS-specific problem -- it’s a challenge in any ongoing condition. The World Health Organization has estimated that only 50% of people with a persistent illness continue long-term therapy. This is related to hundreds of billions of dollars a year in additional health care costs.
With MS, when you don’t stay with your treatment, there’s the chance that the disease will continue unchecked. That means your immune system can go on causing inflammation and damage in your central nervous system. And “time is brain”: If there’s damage, it can be permanent -- you may not get that function back.
Research has shown over and over again that MS disease-modifying medications limit new clinical activity or relapses. They also slow progression and lessen the amount of new damage in the central nervous system. In short, not treating your condition can equal more disease activity.
Studies show that the No. 1 reason people with MS don’t keep up with their medication is that they simply forget to take it. There's a lot going on in life that can impact your ability to stick with your treatment.
In addition to remembering to take your medication, it’s important to believe that it will help you. A number of recent studies have shown that this buy-in is key. When you believe it will be effective, it motivates you to stick to it.
Other things that may affect your ability to stay on your medicine are side effects and cost. What’s the actual out-of-pocket amount? Is it too much to manage? Sometimes the expense of medication leads people to either ration theirs or not take it at all.
You can also have difficulty when you don’t keep up with other types of MS treatment, such as physical or occupational therapy. These can help you get stronger and have better endurance, mobility, and flexibility. And regular physical activity can help support mental health and lessen fatigue. But without doing these things consistently, you won’t get all the benefits.
There have probably been more than 40,000 papers written on the topic of people following or not following their treatment plans. One thing we’ve found is that proactive follow-up from providers is helpful in getting people to start and continue it. Results are better when providers simply check in and ask questions like, “Are you missing any doses of your medication?” or “Are you having any side effects? If so, what are they?”
It’s also important that you and your provider work together. Our job as providers is to explain and ensure that you understand the benefits of your medicine and any side effects and risks. At the same time, it’s important for us to understand what’s important to you and what your concerns may be. Then that information can be used to make a shared decision. When we have shared goals and a shared decision-making process, we have the best chance for success.
There are also practical things you can do to help you stay the course. Set reminders on your phone that tell you when it’s time for your medication. Engage loved ones to help you but not nag you. Have them check in to ask if you’ve taken it. If not, what they can do to help you remember? The best way to stick to your plan is to address these things before they happen.
Most importantly, take ownership of your health. Make sure you understand why your treatments are important. Don’t be afraid to voice your concerns before you get started. Putting you in the driver's seat is probably the most important thing we can do as providers to help you maintain your therapy and manage your MS.