Can you ever stop your MS med?
When a person starts a medication to treat their multiple sclerosis, it’s generally best to plan to take it for many years to come. Ongoing use of a drug is typically needed to control the inflammatory flare-ups that are the hallmarks of MS. Tighter control of the disease is believed to improve a person’s chances of having less disability and a better outcome over the long term.
But there are some situations when it’s best to interrupt therapy or stop treatment altogether. Treatment will usually be interrupted if a woman gets pregnant, with the advice to re-start treatment as soon as possible after childbirth or breastfeeding. There may be a drug holiday if a person develops significant side effects, such as an infection; in that scenario, treatment would be resumed – often with a different drug – once the infection cleared. There may also be an interval off-treatment when switching therapies to allow time for the body to eliminate the first drug before starting the next one.
But are there times when it’s best to stop treatment entirely? This is a controversial and much-debated topic among MS researchers.
There are two main situations when stopping treatment is contemplated: when a person with relapsing-remitting MS (RRMS) enters the secondary-progressive phase of the disease; and when a person reaches a certain age.
Most people with RRMS ultimately develop secondary-progressive MS (SPMS), in which relapses and MRI lesions become less frequent but there is an ongoing accumulation of disability. SPMS indicates that a shift has begun: the active, inflammatory phase of the disease is being superseded by a neurodegenerative phase. Relapses gradually give way to symptoms that worsen (e.g. muscle weakness) but don’t improve. This transition typically starts about 20-25 years after an RRMS diagnosis and may take several years before it is fully established. As a result, there’s some uncertainty about when SPMS should be diagnosed. Typically it’s diagnosed in people in their forties or fifties who haven’t had a relapse or MRI lesion for at least a year or two but have ongoing disability worsening. But an SPMS diagnosis isn’t really that black-and-white: some people will have disease activity (relapses and MRI lesions) without disability worsening, some will have disability worsening without inflammatory activity, and some will have both inflammatory activity and disability worsening (Lublin FD. Eur Neurol 2014;72 Suppl 1:1-5).
Since MS medications primarily target inflammation, the question arises whether they have an effect on disability if there is no inflammatory activity. If their effect is minimal, it raises the issue of whether there’s any point continuing on treatment. Several studies have tried to address this question of stopping treatment – but a few cautionary notes are needed when interpreting the results.
One study in Europe looked at 100 people who had been living with SPMS for at least two years (Bonenfant and colleagues. Eur J Neurol 2017;24:237-244). Everyone had been taking an MS medication for at least five years before they stopped treatment. They found that the average relapse rate remained stable for three years after stopping treatment. However, one-third continued to have relapses and/or inflammatory MRI lesions, which suggests that they would have been better off staying on treatment. A limitation of the study was that the benchmark was the relapse rate – the amount or rate of disability worsening would have been better indicators of whether treatment was needed or not.
A separate study looked at 77 people with SPMS who had experienced no relapses or MRI lesions for up to 20 years (Birnbaum G. Int J MS Care 2017;19:11-14). About 12% had inflammatory flare-ups after stopping treatment, indicating that the medication was still doing something in these people. The key difference between those who relapsed and those who didn’t was age: younger people were more likely to have a relapse, which underscores the importance of not stopping treatment too early. Among those in their sixties or older, about 90% didn’t have an inflammatory flare-up. A similar finding was reported in a U.S. study of people with RRMS who stopped treatment (Yano and colleagues. Mult Scler Relat Disord 2019;35:119-127). Among people with stable MS (no relapses or MRI lesions), there was a risk of having a flare-up in younger people (45 years old or younger), but considerably less risk in people who were older than 45 years. So age is a factor to consider – either because an aging immune system responds differently (to the disease process and to treatments), or because older age means that a person has been living with MS longer (and is more likely to be progressive or has more accumulated tissue damage) (Vaughn and colleagues. Nat Rev Neurol 2019;15:329-342).
Another question to consider is whether a person with significant disability gets any benefit from staying on treatment. One study looked at people with progressive MS who required a wheelchair (Lonergan and colleagues. Mult Scler 2009;15:1528-1531). They found that 1 in 4 were no longer getting a benefit from their medication – but three-quarters were still getting something from their treatment.
Most people with MS who are taking a medication want to keep taking it, even if their disease appears stable. A NARCOMS survey of people with MS found that only 11% would consider stopping treatment if their disease was considered to be “non-active” (McGinley and colleagues. Mult Scler 2019; epublished August 1, 2019). Doctors will take this into consideration. Even if a person has transitioned to SPMS, many neurologists will opt to continue treatment (assuming the insurer will continue to pay for the drug), reasoning that there may still be some underlying inflammatory activity so treatment may be providing some benefit.
Whether treatment should be continued in people after age 60 is less clear. One study in people older than age 60 found that MS generally didn’t get worse after stopping treatment, and people said their quality of life was a little better off treatment (presumably because they no longer were experiencing side effects) (Hua and colleagues. Mult Scler Relat Disord 2019;30:252-256). This points to another area of concern: older people, many of whom have other medical conditions, may have a higher risk of drug-treated side effects.
So in older people, MS treatments may provide less benefit and may be associated with more risks – changing the benefit/risk equation. It may well be that some older people with MS can and should stop treatment – with the caveat that they would be advised to re-start therapy if their disease flares up again.
The current debate about whether older people with MS should or should not stay on treatment isn’t conducted in a vacuum. A consequence of these discussions may be that insurers will say that treatment isn’t worth it in older people and decide that they will no longer reimburse MS drug costs once people reach the age of 60 or 65.
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