In November 2017, a large-scale study was published that caused major concern and confusion amongst the MS community (1). From a meta-analysis of more than 28,000 people with MS (pwMS) taking a disease modifying treatment (DMT), researchers concluded that “after age 53…there is no predicted benefit to receiving immunomodulatory DMTs for the average MS patient”.
Almost immediately, OMS forums and enquiries (and I imagine Neurologists’ offices) filled with people asking questions like
“I’m 55, does that mean I should just stop my medication tomorrow?”
It remains a difficult question to answer when applied to “the real-world” person with MS (pwMS), many of whom had been taking, and remained well on medication for a lengthy period of time. It is extremely important then, that both pwMS and clinicians have as much information as possible to allow for informed decision making.
A new paper may add a very valuable perspective to this particular problem (2). Published in “Multiple Sclerosis and Related Disorders”, a team from the United States looked at pwMS over 60, and whether stopping or continuing their medications had any impact on various health-related outcomes.
This was a retrospective, observational study (looking back at results already obtained rather than setting up a new study and testing a particular intervention) including 600 pwMS who were 60 years of age or older and had been on a DMT for 2 years or more.
The researchers focused on patient reported outcomes (PROs) and timed 25-foot walk (T25FW) test as their key outcome measures. In simple terms, they asked the people involved a series of standardised questions to gain an understanding of their level of functioning or disability (including mobility, fatigue, cognition, bowel and bladder function, spasticity, hand function, vision and sensation) and other measures such as pain scores and levels of anxiety and depression. They then objectively measured how long it took the pwMS to walk 25 feet.
178 (29.7%) of people in the study discontinued their DMT, of which 159 (89.3%) remained off medication.
At the time of discontinuation, the majority (66%) were taking either interferon-beta or glatiramer acetate (copaxone), with fewer people (16.9%) taking oral therapies (fingolimod, tecfidera, teriflunomide) and 8 receiving infusion therapies (natalizumab). There were also 21 patients receiving unapproved treatments.
Discontinuation was recommended by the clinician to 68% of those that stopped their medications, with the most common reasons being:
- side effects
- stable disease
- lack of benefit
- secondary progressive disease
- other health conditions
They found some extremely interesting results. Firstly, that those who stopped their medication had a statistically significant better quality of live over time than those that continued to use DMTs. The authors quite rightly point out that this may at least in part be due to the fact that many had stopped due to side effects, and therefore simply felt better for not taking the treatment, rather than any direct effect on their MS.
Of those 178 people that stopped treatments, there was only one confirmed relapse during the average follow-up period of 5 years.
The researchers made allowances for the different characteristics of those in the study in terms of:
- age at MS diagnosis,
- disease course at diagnosis (primary progressive vs. relapsing remitting),
- proportion of time on DMT,
- baseline DMT (glatiramer acetate, interferon beta, oral (including off label), or intravenous infusion)
- ambulation status at age 60 (no assistance vs. cane/walker/wheelchair/bedbound).
There were no significant differences found between those that continued their medications and those that stopped over age 60, with very similar results in terms of timed 25-foot walk test and all other measures of disability and quality of physical and mental health.
They concluded that
“overall, stopping DMT in patients with MS over age 60 appears to have minimal effect on quality of life outcomes…the results of our study may support stopping treatment in patients over 60, however, further research is needed to determine long-term impact of DMT discontinuation”.
In the meantime, OMS will continue to support each individual’s decision on whether or not they choose to start or stop any particular disease modifying treatment.
Dr Jonathan White MBChB MRCOG
"Meta-analysis of the Age Dependent Efficacy of Multiple Sclerosis Treatments”. Weideman AM; Tapia-Maltos MA; Johnson K; Greenwood M; Bielekova B, Frontiers In Neurology [Front Neurol], ISSN: 1664-2295, 2017 Nov 10; Vol. 8, pp. 577
"Changes in patient-reported outcomes between continuers and discontinuers of disease modifying therapy in patients with multiple sclerosis over age 60" [Multiple Sclerosis and Related Disorders 30 (2019) 252-256]