May 30, 2025 | News | Living with MS MS Research MS Treatments My Voice

The MS treatment experience – survey results (2)

Part 2

We continue our series on the MSology survey and look at the treatment journey of people with multiple sclerosis in Canada. About 58% of survey respondents said they were diagnosed within the first three years after MS symptoms occurred. However, a considerable proportion – 15% – said they were only diagnosed 10 or more years after their first symptoms.

One-third of people said that MS was first mentioned as a possible diagnosis by their family doctor, suggesting that general practitioners are doing a good job identifying MS. Another 22% said MS was raised by an MS clinic neurologist, which may indicate that front-line physicians often refer people for specialist evaluation before committing themselves to a diagnosis. Another 20% said that another health professional (optometrist, physiotherapies) or they themselves were the ones who first suspected MS. Once MS was suspected, a majority received a formal diagnosis either by an MS clinic neurologist (52%) or a neurologist in their community (37%). This underscores the importance of having access to specialist care in Canada to ensure a prompt diagnosis.

About 60% of people said their neurologist talked to them about starting a disease-modifying therapy (DMT) either at the first visit or within the first six months. However, one-third said a discussion about treatment options only happened over a year later or never at all. After having the discussion, two-thirds of people said they started taking a DMT within a year. Interestingly, people were more likely to start a treatment within a year if they were seeing a community neurologist (57%) rather than an MS clinic neurologist (42%).

The most common starting treatment was Copaxone or a generic equivalent (28%). Another 19% started with an interferon medication (Rebif, Avonex, Betaseron). This likely reflects the age of respondents; injectable therapies were the only option for people diagnosed 20 years ago. The second-most common starting treatment was Ocrevus (21% of people), which became available in Canada in 2017; Kesimpta, available since 2021, was prescribed as a first-choice treatment to about 5% of people. Another 22% were started on an oral therapy (Tecfidera or Aubagio). No one said they started treatment with the other two orals (Gilenya, Mavenclad); Gilenya has fallen out of favour in recent years and reimbursement for first-line use of Mavenclad is difficult to obtain.

Once treatment was started, most people (49%) switched therapies at some point. Unfortunately, in 15% of cases, people stopped treatment altogether if the first medication was ineffective or poorly tolerated. This is a challenge since people do not have the same response or tolerance to a given medication so a little trial-and-error may be needed. The age of survey respondents may factor in as well. Some people starting treatment with one of the early injectables may have been turned off this whole category of medications and opted not to continue.

The most common subsequent DMTs were Ocrevus (19%) and Mavenclad (15%). However, 42% of people were switched to a modest-efficacy therapy, such as Aubagio, Tecfidera, Copaxone or an interferon. This may indicate that the full range of treatment options was not available at the time of switching, or that many switches were made because the person poorly tolerated the side effects of the initial therapy. Indeed, people with MS and their doctors have very different reasons for switching. One-third of survey respondents said their doctor switched treatments because the first medication was not fully effective. One-quarter of respondents said their doctor agreed to the switch because they reported intolerable side effects.

The increasing popularity of higher-efficacy DMTs (e.g. Ocrevus, Kesimpta, Mavenclad) likely reflects several factors. All were approved for use in MS within the last 10 years. Their advantages are that they are generally well tolerated and they do not need to be taken every day. Ocrevus is given at an infusion centre every six months, Kesimpta is self-injected at home once a month, and Mavenclad is taken in pill form for two weeks a year for two years. The changing efficacy and safety profile of MS medications likely explains why people view treatment differently now. A recent survey found that older people with MS are primarily interested in a medication that is safe; among younger people with MS, treatment efficacy was the top priority when selecting a therapy (Eggert and colleagues. Int J MS Care 2025;27(suppl 1):27).

When asked about MS treatments, the survey responses were predictably varied. There were a few naysayers who thought that DMTs are not effective, provide little benefit, are inconvenient or expensive. Two people said they were a necessary evil. However, most respondents had a more positive view. Here is a sampling of some of the responses:

“They are absolutely necessary.”
“Life-changing, I should have been on DMT immediately.”
“Treatment has helped me a lot.”
“I’m very hopeful to have great results with stopping progression or even improving lesions.”
“Though we may never know if a DMT will slow progression, my opinion is to do all I can do, within my control, to have peace of mind knowing I am attempting to slow its progression in my life.”
“I believe in the importance of DMTs for managing my MS, but I also recognize that diet, environment, and lifestyle play a vital role — guided always by my strong trust in science.”
“I believe DMT’s have their place, but each individual has to make their own decision. What works for one may not always work for another. We all have such diverse symptoms, but fortunately there are many DMT to choose from now.”

The treatment journey is a challenge. The hope is that current therapies – and additional treatments soon to come – will control the MS disease process and provide ongoing improvement in the lives of people with MS.

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