It’s not uncommon for people who have been living with multiple sclerosis (MS) for a number of decades — often spending the majority of that time on one of a growing number of MS disease-modifying therapies (DMTs) — to wonder if it might be time to stop with the drugs.
We hear of things like burnt-out MS — a term with more than one definition but generally implying that MS progression has ceased — and wonder if our version of the disease fits into that category, in which case, perhaps, the meds are no longer needed.
But what if stopping the drugs leads to a severe rebound or a phase of symptom worsening, as research shows it does in some people who stop certain MS medications? Still, maybe we’d be among those who don’t rebound when dosed with other medications while stopping the first, as additional research shows can happen.
It all gets complicated, and that’s on top of dealing with all the other midlife issues that layer with that life with MS. “Clear as mud,” my great-grandfather used to say.
New Study Looks at People in Midlife Specifically
A new study in the Journal of Neurology might be of interest to those of us who have passed the halftime show of life and are considering (and chatting with our medical team about) discontinuation of our DMTs.
First, it’s important to note that stopping a DMT, or any prescribed medication, should take place only after consulting with your doctors. Even if your physician agrees with stopping the medication, it may be necessary to taper off it slowly, or to substitute another medication, rather than stop it abruptly, to minimize any negative side effects.
Don’t go it alone.
The new study followed over 200 patients in middle age (median age of 52.8 years at enrollment). The researchers delineated medications into first-line DMTs and more aggressive second-line DMTs for MS.
These first-line meds would be injectables, which would normally be prescribed to people early on and usually in the relapsing-remitting phase of the disease. Until now, most studies about going off DMTs have been done on these first-line drugs, even for middle-aged people.
This study followed also those who were on stronger, second-line DMTs such as natalizumab (Tysabri) and fingolimod (Gilenya).
Relapse Risk Varied by MS Medication
For people discontinuing a first-line medication, the probability of having a relapse within one year increased by 6 percent. For those on stronger second-line meds, however, the rate was between 9 percent and 43 percent depending on the medication.
Relapses resulting from second-line drug discontinuations peaked between zero and three months.
It’s a difficult thing to stay on medications that are expensive and can have significant side effects, particularly if you’ve been on them for what seems like a lifetime. This study shows that for some people with MS, considering discontinuation could be worth at least a conversation.
If the drug you are taking is one of the second-line meds — particularly natalizumab — the rebound effect seems to follow us well into our middle years. For those people, researchers say that considering a change of DMT, rather than discontinuation altogether, might be the better choice. Something of a step-down approach, which they hope would bring the relapse rate down closer to that of other medications.
A Good First Step, but More Research Is Required
There have been few studies comparing discontinuation of first- and second-line medications the way this study did. It is only one study, and it followed a relatively small number of people. Therefore, more research is required, but this first step is an important one for those of us who feel relatively stable here in midlife with MS and who are wondering if it’s time to consider a change.
Talk to your doctor about this study and see what they have to say.
Wishing you and your family the best of health.