Are you getting the treatment you need?
European Committee for Treatment and Research in MS (ECTRIMS) – 31st Congress – Barcelona, Spain, October 7-10, 2015 – People with relapsing-remitting MS commonly start treatment with one of the medications as soon as they are diagnosed. This used to mean an injectable drug (an interferon or Copaxone) because that was the only thing available. Over the past decade, the choice has broadened to include oral medications (Aubagio, Tecfidera, Gilenya), or an infusion agent (Tysabri or Lemtrada).
With such an array of options, it’s fair to ask how a medication is chosen for your own particular condition.
A recent survey of people registered with the North American Research Consortium on MS (NARCOMS) found that the choice of treatment was generally a decision shared by the neurologist and patient (Salter and colleagues. ECTRIMS 2015; abstract 1159). People had less of a say at the beginning of treatment, but had more of a voice over the course of therapy. For example, when choosing to take a break from therapy or to stop treatment altogether, this was often the individual’s decision (and maybe against the doctor’s advice).
The first choice is often not the best choice – either because side effects make it hard to stay on treatment, or the medication isn’t working work well. If side effects are the problem, the individual and the physician will often decide together to change the medication. Doctors are well aware that there’s little point prescribing a medication that the person finds too difficult to take.
In the case of a medication that isn’t doing the job – as determined by the neurological exam and MRI findings – you might expect that the neurologist would make the call to change treatments. But curiously enough, it’s often the patient rather than the physician who decides to try something better.
There are no firm criteria for determining if a treatment isn’t working well enough. As a general rule, people who continue to have evidence of disease activity – relapses, new MRI lesions and/or worsening progression – would be well advised to try another medication.
However, doctors may postpone the decision to switch medications for years. The EPIDEM study in Germany has looked at some of the factors that influence doctors’ decisions about treatment (Schmidt and colleagues. ECTRIMS 2015; abstract P294). The study found that among people taking an interferon or Copaxone, 70% continued to have relapses, 44% had worsening disability and 40% had new flare-ups in the brain on their MRI. Despite this, in 85% of cases the doctor rated the patient as being improved or stable, so there was no attempt at switching medications to get a better response. Doctors were generally satisfied if a person had only one or two relapses during treatment. It was only after a person had five or more relapses over a 2-3 year period that a majority of doctors considered a switch. Ongoing inflammation, evidenced by new lesions on an MRI, is often a greater cause for concern that relapses – but again, only 38.5% of people with a “hot” MRI were considered for another treatment.
These studies suggest that many people – and a majority of those taking an injectable medication – are not getting the full benefit of treatment.
How important is it to get MS under control? This question was addressed in a large database analysis involving over 32,000 people with MS from 108 countries (Kalincik and colleagues. ECTRIMS 2015; abstract P636). For people with little disability (an EDSS score less than 3), ongoing relapses while taking an MS medication were highly prognostic of how well they will do later on. If a person continued to have relapses, they had a 2-fold higher risk of developing moderate-to-severe disability (an EDSS score of 4-6). Once they had some disability (EDSS 3-6), the most important factor for reducing the risk of getting worse was the time spent on a higher efficacy medication, such as Tysabri, Gilenya, or Lemtrada. This means that if MS is active, it’s better to take a more active medication. It remains to be seen if switching to one of these more potent medications earlier on – before any disability has developed – will prevent the early nerve damage that ultimately causes the irreversible disability seen in MS.
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