When Can We Stop Taking Our MS Drugs?
It’s easy to be lulled into thinking we are better in our health and stop taking our medications. That is why there is that warning notice on the bottles of antibiotics you might be prescribed for infections - the one that says ‘important! Take this medicine until gone.’ The medical experts know we need to take all of these drugs to really eradicate the cooties they are prescribed to cure. If we stop them too soon, it is always possible the infection is still there and will come back and create more problems.
Recent studies show the same might be applied to taking our Multiple Sclerosis disease modifying therapies (DMTs) – it’s easy to be lulled into thinking that our MS is fine, we haven’t had a relapse in a long time, and we appear to be stable. The natural thinking is to believe stopping our DMT is logical and ok to do. A study announced at the 2015 American Academy of Neurology Annual Meeting looks at this question in a group of people who were on a DMT, but were clinically stable and discontinued their use.
The initial results were shared in a presentation titled “‘Doctor, can I stop my medicine?’ Analysis of disease course after stopping disease-modifying therapy in stable MS patients .”
Researchers at NYU Langone MS Center looked at the records in a worldwide MS patient registry and identified 181 people to study. This group had stopped taking their DMT after being clinically stable for at least five years, and were age 40 or older. All the people studied had been on their particular DMT at least three years. Their records after they stopped taking the DMT were also available for a period of at least three years.
According to a NYU Langone MS Center press release –
“After discontinuing medication, 24 percent of patients experienced a clinician-reported relapse, 32 percent sustained three-month disability progression, and 10.6 percent of patients recorded both relapses and disability progression.
Researchers found 77 patients - or 42 percent - restarted medication after a median of 22 months. Restarting medication was associated with a 59-percent risk reduction of disability progression.”
In my thinking, those are significant numbers and if I am tolerating my DMT, these statistics might be enough to keep me from stopping my therapy even if I have been clinically stable. The lead researcher is quoted saying pretty much the same -
"Despite long periods of disease stability while taking medication, we found a large minority of patients who stopped experienced relapses or disability progression," says lead study author Ilya Kister, MD, an assistant professor of neurology at the NYU Langone Multiple Sclerosis Comprehensive Care Center. "We need to identify situations when it is safe for patients with MS to stop taking these medications."
According to their release, the research team recommends further studies because according to Dr. Kister, "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.”
Perhaps our MS drugs need the label similar to those antibiotics – Warning! Do not stop taking this drug until the MS is gone.
Wishing you well,
Does your employer provide workplace accommodations due to your MS?