By Kathleen Costello, MS, told to Rachel Reiff Ellis
Medications don’t work in people who don’t take them. It sounds oversimplified, 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 persistent disease continue long-term treatment. This is linked to hundreds of billions of dollars a year in additional health care costs.
With MS, when you don’t continue with your treatment, there is a risk that the disease will continue unchecked. This means that your immune system can continue to cause inflammation and damage in your central nervous system. And “time is the brain”: if there is damage, it may be permanent – you may not be able to recover this function.
Research has repeatedly shown that MS-modifying drugs limit new clinical activities or relapses. They also slow progression and decrease the amount of new damage in the central nervous system. In short, leaving your disease untreated can lead to more disease activity.
Studies show that the number one reason people with MS don’t follow their medications is that they simply forget to take them. There are a lot of things going on in life that can impact your ability to stick to your treatment.
In addition to remembering to take your medications, it is important to believe that they will help you. A number of recent studies have shown that this adherence is essential. When you think it will work, it motivates you to stick with it.
Other things that can affect your ability to continue taking your medicine are side effects and cost. What is the actual amount disbursed? Is it too difficult to handle? Sometimes the cost of drugs causes people to ration their own or not take any at all.
You may also have difficulty when you are not taking other types of MS treatment, such as physiotherapy or occupational therapy. These can help you get stronger and have better stamina, mobility, and flexibility. And regular physical activity can help support mental health and reduce fatigue. But without doing these things consistently, you won’t get the full benefits.
There have probably been over 40,000 articles written on the subject of people following or not following their treatment plans. One thing we’ve found is that proactive follow-up from vendors is helpful in getting people started and continuing. Results are best when providers simply register and ask questions such as, “Are you missing any doses of your medications?” or “Do you have any side effects?” If that’s true, what are they?”
It’s also important that you and your supplier work together. Our job as providers is to explain and make sure you understand the benefits of your medicine and any side effects and risks. At the same time, it is important for us to understand what is important to you and what your concerns may be. Then this information can be used to make a shared decision. When we have common goals and a shared decision-making process, we have the best chance of success.
There are also practical things you can do to help you stay on track. Set reminders on your phone that let you know when it’s time to take your medicine. Engage your loved ones to help you, but not to harass you. Ask them to check if you took it. If not, what can they do to help you remember? The best way to stick to your plan is to address these issues before they arise.
Above all, take charge of your health. Make sure you understand why your treatments are important. Don’t be afraid to voice your concerns before you begin. Putting you in control is probably the most important thing we can do as providers to help you maintain your treatment and manage your MS.