NYU Langone Researchers Report What Happens When Multiple Sclerosis Patients Abandon Treatment

A team led by researchers at the New York University (NYU) Langone Medical Center recently assessed what happens when clinically stable patients with multiple sclerosis (MS) stop taking their medication and found that almost 40% of them experience to some extent a return in disease activity and related symptoms. The results of this study were presented on April 22, 2015 during the American Academy of Neurology Annual Meeting being held in Washington, D.C, Poster Session V – P5.192 entitled “Doctor, can I stop my medicine? Analysis of disease course after stopping disease-modifying therapy in stable MS patients.”

MS is a chronic, progressive neurodegenerative disorder that results from the attack on the central nervous system by the body’s own immune system, causing inflammation and damage to the myelin layer that covers and protects neurons. Myelin loss leads to impairment in signal transmission along nerve fibers, affecting motor function (like coordination, balance, speech and vision), causing irreversible neurological disability and partial or complete paralysis. It is estimated that more than 2.3 million people in the world suffer from MS.

Disease-modifying medication can help in the management of MS by reducing the symptoms and slowing disease progression. According to the National Multiple Sclerosis Society (NMSS), some patients, however, abandon medication due to related side effects, the fact that they still have exacerbations, the perception that they are not feeling better or due to insurance reasons.

“Decisions regarding stopping disease-modifying therapy may have implications for short and long-term prognosis. We know a lot about what happens when therapy is started, but we know very little about what happens when therapy is stopped,” noted the study’s lead author Dr. Ilya Kister in a NYU Langone press release.

The events that occur once a clinically stable MS patient discontinues therapy are poorly understood in the medical community. In this study, researchers conducted a multi-site, international analysis with 181 MS patients from the ongoing, observational database MSBase Registry and assessed rates of disease relapse and disability progression in patients who had abandoned treatment. Participants were aged 40 or older, had a stable disability progression for at least 5 years with no relapses and were under disease-modifying medication for at least 3 years. Once patients discontinued medication, they were followed-up for at least three years.

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Researchers found that after stopping medication, 24% of the patients had a clinician-reported relapse, 32% had sustained three-month disability progression and 10.6% experienced both relapses and disability progression. After a median of 22 months, 42% of the patients (77 individuals) restarted treatment, which was found to be linked to a 59% reduction in the risk of disability progression.

“Despite long periods of disease stability while taking medication, we found a large minority of patients who stopped, experienced relapses or disability progression,” concluded Dr. Kister. “We need to identify situations when it is safe for patients with MS to stop taking these medications.” The research team suggests that further studies should be conducted on the discontinuation of therapy in MS patients to determine when it might actually be a safe option for the patients to stop their medication.