Author Kathleen Costello, MS, tells Rachel Reiff Ellis
Drugs don’t ‘can’t be in Work on people who don’t accept them. This sounds overly simplistic, but it is. This is not an MS-specific problem – a challenge in any ongoing situation. The World Health Organization estimates that only 50% of people with persistent disease continue long-term treatment. This is associated with hundreds of billions of dollars in additional healthcare costs each year.
For MS, if you do not adhere to treatment, there is a chance that the disease will remain unchecked. This means that your immune system continues 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 restore that function.
Studies have repeatedly shown that MS can limit new clinical activity or relapse with disease-modifying drugs. They can also slow progression and reduce new damage to the central nervous system. Simply put, not treating your condition can equal more disease activity.
research shows that the number one reason people with MS don’t take their medication is that they simply forget to take it. There are many things in life that can affect your ability to stick with your treatment.
In addition to remembering to take your medicine, it is important to trust that it will help you. Some recent research suggests that this support is key. When you believe it will work, it motivates you to stick with it.
Other factors that may affect your ability to continue taking your medication are side effects and cost. What are the actual out-of-pocket costs? Is it too much to manage? Sometimes drug costs cause people to either ration their medication or not take it at all.
You can also have difficulty when you are not keeping up with other types of MS treatment, such as physical or occupational therapy. These can help you get stronger and have better stamina, mobility and flexibility. Regular physical activity can help support mental health and reduce fatigue. But if you don’t do these things consistently, you won’t get all the benefits.
There may be over 40,000 papers on people following or not following treatment plans. One thing we’ve found is that proactive follow-up by the provider helps get people to start and continue it. Results are better when the provider simply checks and asks questions like “Are you missing any doses of your medication?” or “Do you have any side effects? If so, what are they?”
It’s also important that you work with your provider. As providers, our job is to explain and make sure you understand the benefits of your medicines and any side effects and risks. At the same time, it is important to us to understand what is important to you and what concerns you may have. This information can then be used to make joint decisions. We have the greatest chance of success when we have common goals and a common decision-making process.
There are also practical things you can do to help you stay the course. Set reminders on your phone to tell you when it’s time to take your medicine. Let your loved ones help you, but don’t nag you. Let them check and ask if you have taken it. If not, what can they do to help you remember? The best way to stick to your plan is to address these things before they happen.
Most importantly, take control of your health. Make sure you understand why your treatment is important. Don’t be afraid to express your concerns before you start. Putting you in the driver’s seat is probably the most important thing we can do as a provider to help you maintain treatment and manage your MS.
