Using disease modifying therapies (DMTs) to treat older people who have multiple sclerosis, like me, isn’t a simple choice.
Many neurologists seem to make their recommendations guided by a 2017 review by University of British Columbia researchers, reporting that disease activity declines as people with MS grow older. It suggested that those of us who are 55 or older – and are having no relapses, new brain lesions, or other MS activity – can probably quit any DMTs we’ve been receiving, as long as we’re are carefully monitored.
That review – combined with a lack of clinical trials involving older people with MS and a concern about the impact that DMT side effects might have on older people – may be why those neurologists have been recommending ceasing DMT treatments for MS “seniors.” Thankfully, a small survey, presented as a poster at the May, 2025 conference of the Consortium of Multiple Sclerosis Centers, indicates that some of these views may be shifting.
Things may be changing for older people with MS
The survey was sent to members of the Medical Partnership 4 MS+ (MP4MS+), a group of more than 1,300 neurologists. Although only 341 responses were received, just over 87% of those neurologists reported they had no “age rule” about discontinuing a DMT. Nearly 78% did not recommend discontinuing to their stable patients. Over 64% felt the extent of MS disability should not play a role in this decision. Half felt that discontinuation should only be considered after 10 years of stability.
I hope this sample represents a much larger group of MS neurologists, especially because the MS patient community is growing older. A 2015 study published in the Journal of Neuroscience Nursing reports “approximately 90% of people with MS now in their 20s may live into their 70s,” and “approximately a quarter of people with MS are mature adults over 65 years old.” And that research was done a decade ago. I suspect the advances made in DMT efficacy since then have created an even larger population of MS “seniors.” Approaching age 77, I’m one of them.
My experience
I was 68 when my neurologist and I agreed that treatment with Lemtrada (alemtuzumab), my fourth DMT, might be useful. I was still looking for a treatment that would be effective at slowing my MS progression and she suggested three possibilities: Ocrevus (ocrelizumab), Gilenya (fingolimod), and Lemtrada. She wrote out the possible benefits and risks of each and together we concluded that, even at my age, Lemtrada would be best. Its efficacy was high, the therapy’s two treatment rounds – a year apart – would fit into my lifestyle, and it would be covered by my insurance. We agreed that its pluses outweighed its minuses.
Before I began those infusions, I had already decided that Lemtrada would be my final DMT. I’d be 70 after the two rounds were complete and enough is enough. Though the Lemtrada didn’t stop my progression, I think that it did slow it. I also think that it improved my bladder and bowel symptoms. My side effects were minimal; primarily some severe fatigue and one or two urinary tract infections.
I think it was the right decision, both to start Lemtrada and to stop.
A study published in the Journal of Multiple Sclerosis and Related Disorders in 2022 provides some evidence supporting the choice to start. The study looked at 216 MS patients of varying ages who had all discontinued their DMTs. About three-quarters of them were considered stable. After discontinuation, however, almost a third had their MS worsen. This resumption of progression was similar whether the patients were older than 55 or younger.
So, why did I stop? Simply, because I’d received the recommended dosing for the recommended period of time, of a highly effective treatment. It had done its work and, then in my 70th year, I didn’t think the benefits exceeded the risks and lifestyle impacts any longer.
The important thing is, at age 68 I was still given a choice of using a heavy duty DMT. My age did not, arbitrarily, create a barrier. Of course, with MS one size doesn’t fit all. Continuing, or discontinuing, a DMT needs to be an collaborative decision between patient and doctor, and basing that decision on age alone just doesn’t seem right.
(A version of this post first appeared on the Rare Disease Advisor website.)
(Image by Frauke Riether from Pixabay)
