There are many reasons that people who are taking medications to help treat their multiple sclerosis might start to have second thoughts. Sometimes the side effects can be unpleasant or unbearable. Other times, the drug may not be helping them feel better or they continue to experience relapses. For some, the insurance costs may just be too high.
Until now, there has been very little information available about what happens when treatment is stopped in people with MS who are on disease-modifying therapies (DMT). Last week I came across a poster at the AAN meeting that addresses this important, unanswered question. Lead investigator Dr. Ilya Kister from the New York University (NYU) Langone Medical Centre set out to determine what happens to individuals whose disease symptoms have been stable when they decide to discontinue their DMTs. This is an important question, since identifying situations in which it is and isn’t safe for people with MS to stop taking their medications will go a long way to ensuring that disease symptoms don’t come back.
Dr. Kister and colleagues examined data from 181 participants with MS who were enrolled in the global MSBase Registry. Participants were selected according to some very specific criteria: 1) they had been on a DMT for at least 3 years; 2) they had discontinued taking the DMT, after which they were monitored for at least 3 years; 3) their disability progression was stable and they experienced no relapses for at least 5 years, and; 4) they were over the age of 40.
It turns out that in certain people, abandoning treatment might cause disease symptoms to come back. In participants whose disease course had been stable while on a DMT, 24% of them experienced a clinician-reported relapse, 32% experienced disability progression that was sustained over three months, and 11% of them experienced both relapses and disability progression after discontinuing their DMT. A sizeable minority of the participants (42%) who stopped taking their DMT restarted treatment after a median of 22 months, and overall they experienced reduced disability progression compared to participants who didn’t restart treatment. Another interesting observation was that participants who were younger or had a lower clinical disability score were more likely to restart treatment than participants who were older or had greater disability, although why this was the case is unclear.
So what does this mean for someone who wants to stop their medications? The data so far shows that for people on DMTs whose disease has been stable for several years, there is a risk that discontinuing treatment may be bad news for keeping relapses and disability at bay. Dr. Kister and her colleagues stress that further studies are needed to accurately determine when it is a safe option for people with MS to stop taking their medications. In the meantime, it is always good practice to consult with your health care team when making decisions about seeking or stopping treatment.
Have you been in a situation where you have had to stop taking your medications? Share your story below.