Choosing and staying on MS therapy: What are people doing and why?

Everyone has their own journey with multiple sclerosis (MS). One part of life with MS involves treatment.
At some point, we all have to make a decision about initiating treatment with disease-modifying therapy (DMT) or a decision to not use therapy at all. For most people living with MS, decisions around treatment, both disease-modifying therapies and symptom management approaches, can be emotionally-charged and filled with ambivalence.
Many considerations go into treatment decisions, not just how effective the meds are, but lifestyle factors, costs, doctor's opinion, injection frequency and other things specific to an individual's life and values.
Once a therapy is selected, there is the matter of adherence – taking treatment as prescribed and staying on it. This comes with its own challenges as we try to adapt to using these drugs in a real-life setting, coping with needle anxiety, unpleasant side effects, timing issues and other aspects of fitting these meds into our lives. Often, we have a hard time reconciling the images of happy people in the marketing materials that came with these medications with our own situation.
One US study looked at what happens to people in terms of treatment initiation and continuation after diagnosis with MS.
Here is what they found:
  • 30% of people started an interferon (Rebif, Betaseron, Avonex) an average of over 5 months after diagnosis
  • 16% started Copaxone an average of over 6 months of diagnosis
  • 4% started something else (Tysabri, mitoxantrone, IVIG) a year and a half after diagnosis
  • Nearly 50% of people in the database had not started any disease-modifying therapy four years after treatment
What happened to the people that started? About half of the people who initiated therapy stayed on it for all four years, although about 10% of people switched to another disease-modifying therapy. Interestingly, half of the people that discontinued their DMTs said they would restart the drug.
Another study also looked at persistence with treatment (how long they stayed on medication) once people started and found that, on average, people stayed on the first DMT that they were prescribed for 2.9 years before switching or quitting treatment altogether.
That tells us what happened around the treatments that people selected and how long they stayed on them. However, why do people continue or stop therapy? One UK group looked at people who started "high-dose, high-frequency" interferon (aka Rebif) to see what they did and why.
They found that 68% of people had "no concerns" before they started therapy. However, 24% discontinued therapy by the end of the 4.5-year study period, the most common reason being that they "felt unwell" on this therapy. Interestingly, people who felt uninformed about the treatment before they started were more likely to discontinue treatment (and discontinue it sooner) than those who felt "informed."
What I can take away from this is that it really serves us well to research our medications. That will tell us what to expect, so that we can prepare better.
For some tips on how to do this, read my article on some ideas on learning more about your meds:
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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.