The Great MS Meds Survey – Part 2

MSology surveyed readers in February/March to ask them about their experiences with their MS medications. Among the 388 people who responded to the Great MS Meds Survey, 72% said they were currently taking an MS med, 20% had tried a medication but had stopped treatment, and 8% had never started (see Part 1 of this series).

Before we look at individual therapies, let’s look for a moment at the untreated group. People who never started taking a medication were generally older (77% were 50+ years of age) and had been living slightly longer with MS than the average: the largest proportion (39%) have had MS for over 20 years, and 68% overall have had MS for over 10 years. MS medications are not effective in people with progressive disease, and unfortunately in many cases, people aren’t taking a medication because they have primary-progressive MS (PPMS; 17% of the no-treatment group) or have developed secondary-progressive MS (SPMS; 27%). The lack of effective treatments for progressive MS is a major shortcoming of MS research, but there is some hope now that one treatment (Ocrevus) has been approved for PPMS, and scientists are more actively researching additional therapies. All respondents who said they had progressive MS would start treatment if one were available.

Other common reasons not to start treatment were fear of side effects (33%), and doing well without treatment because of a less severe disease course (17%). This less-severe group may represent the estimated 10-15% of people with “benign MS”, i.e. little worsening in their disability for the first 10-20 years of living with MS.

What about the people who are currently taking an MS med? A decade ago, all would have been taking one of the so-called CRAB injectables (Copaxone, Rebif, Avonex, Betaseron), because they were the only option available. But the situation changed seven years ago as oral therapies – Gilenya, Aubagio and Tecfidera – became available (Gilenya is kept in reserve in many countries for people who don’t respond or can’t tolerate another medication).

Injectables are still commonly used: About 20% of people are taking Copaxone, 9% are taking Rebif, 8% are taking Avonex, and 2% are taking Betaseron. Plegridy had not been widely adopted at the time of the survey (2%).

However, 49% of survey respondents said they are now taking an oral MS medication – either Tecfidera (22%), Aubagio (16%) or Gilenya (11%). About 10% of people have a more severe disease course, and this is reflected in the use of the highest-potency drugs: about 5% take Tysabri, and 4% take Lemtrada.

Oral medications are a less painful option than an injectable, so why do so many doctors continue to prescribe interferons and Copaxone?

Interferons were the first MS medications, introduced 25 years ago, and have a very good safety record over the long term. Copaxone is often chosen because of its relative safety for women who are thinking about becoming pregnant. Most of the respondents to the Great MS Meds Survey were in their 50s or older, and over one-half have been living with MS for 11 years or more. So they would have started treatment when an injectable was the only choice available.

The 40% of respondents who are on an injectable may be doing well, so there may have been no reason to consider other options. But the Survey hints at a more troubling conclusion: 48% of people on an MS medication are taking the first drug they were prescribed. They have never taken anything else. About 17% have taken one prior medication, 19% have taken two prior medications, 7% have taken three, and 9% have taken more than three prior meds.

An MS med is prescribed as soon as possible once a diagnosis of MS has been made. Over the next year or so, the neurologist sees how well the person is doing (a neuro exam and an MRI), and ensures that the person is satisfied with the drug (and is taking it!). If there’s a problem with the treatment – it isn’t working (based on relapses or MRI lesions) or the side effects are intolerable – another treatment may be the solution. It may be that in 48% of cases, the first choice was the best choice for our Survey respondents. Or it could be that habit, or what has been called “therapeutic inertia” (a tendency to stay the course despite reasons to switch therapies), has set in. In any event, the Survey found that once a medication is started, the person has a 50:50 chance that they’ll be taking the same therapy for the next decade or more.

The Great MS Meds Survey allows us to delve more deeply into people’s longer-term treatment experience – those who have switched medications, and those who have switched and then quit treatment altogether. That will be the topic of Part 3 of this series.

Part 1 of the survey results
Part 3 of the survey results
Part 4 of the survey results
Part 5 of the survey results

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