Is there a time when multiple sclerosis (MS) is finished attacking the nervous system – when it just “burns out” and there’s no longer any need to continue using a disease-modifying therapy (DMT)?
A 2017 review by researchers at the University of British Columbia notes that disease activity declines as people with MS grow older. It suggests that those who are 55 years or older and have had no relapses, new brain lesions, or other MS activity, can probably quit any DMTs they have been receiving, if they are carefully monitored.
This report – combined with a lack of clinical trials involving people in that age group plus concern about the impact of DMT side effects on older people – may be why some neurologists suggest that their older patients end their DMTs.
Don’t write-off DMTs for older MS patients
It can be a struggle for people like me, a 75 year old, to have a DMT prescribed or continued, particularly one of the newer, high-efficacy medications. But, I was fortunate. I was 68 when my neurologist and I agreed that treatment with Lemtrada (alemtuzumab), my fourth DMT, might be useful.
My first, in the mid-1990s, was Avonex (interferon beta-1a). I had limited success with it (and eventual had needle fatigue). Next came Tysabri (natalizumab), which seemed to hold my progression to a crawl, but raised my JCV titer to a concerning level. Aubagio (teriflunomide), a daily pill, was the easiest to handle, but it became too expensive for my budget when I switched my insurance to Medicare.
So, in the winter of 2016 I was looking for something else to hold my MS at bay. My neurologist suggested three DMTS – Ocrevus (ocrelizumab), Gilenya (Fingolimod), and Lemtrada – and wrote out pluses and minuses for each. We concluded that, even at my age, Lemtrada was best and its benefits outweighed its risks.
The right decision for me
A study published in the Journal of Multiple Sclerosis and Related Disorders in 2022 provides some evidence that my decision to continue a DMT late in my MS life was the right one.
The study looks at 216 MS patients of varying ages who discontinued their DMT. Of that group just over 72% were classified as stable before their treatment ended. After discontinuation, almost a third had disease worsening/progression (DWP). After two or more years without a DMT patients like me, who had an Expanded Disability Status Score (EDSS) of 6.0 or higher, had greater DWP compared to patients who were less disabled. The rate of DWP was similar whether the patients were younger or older than 55.
A couple of years prior to that study, researchers at Brigham and Women’s Hospital in Boston reviewed a group of 195 people with MS who were 65 or older. These researchers reported that this group had only a low rate of adverse reactions to DMTs, such as Lemtrada, and that most side effects were mild, suggesting that it should be safe for seniors to use high-efficacy DMTs.
I’ve not been treated with a DMT since I finished my second round of Lemtrada about five years ago. Before I began that medication, I had already decided that it would be my last. The treatment may or may not have slowed my MS progression, (I do think it helped improve some symptoms a bit), but I’m glad that my age wasn’t used as an arbitrary treatment barrier.
Age isn’t the only factor
According to a 2015 study in the Journal of Neuroscience Nursing, “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.” I suspect the population of MS “seniors” has increased since that report eight years ago.
A decision about discontinuing a DMT should not be based solely on a person’s age or the length of time living with MS. Selecting a treatment should balance several things, including the patient’s lifestyle, risk tolerance, ability to afford the treatment and, of course, the likelihood that the DMT will be successful in slowing disease progression.
Let’s also include people over 50 in DMT clinical trials and real-world studies, so that neurologists and older MS patients can both have some solid risk-benefit data available when making treatment decisions. That would be a win-win for the pharmaceutical companies doing the research as well as for older patients, like me, who are trying to live the best lives they can, no matter how long they’ve lived with MS.
(A version of this post first appeared on the Rare Disease Advisor website.)
(Image by Gerd Altmann from Pixabay)
