The Great MS Meds Survey – Part 3

We continue our report on people’s experiences with MS medications, using data we obtained in the Great MS Meds Survey posted on MSology in February/March (see Part 1 in this series). In this installment, we’ll look at people who switched medications at some point during their course of treatment.

At the time of the survey, 72% of respondents were taking an MS medication, 20% had stopped treatment, and 8% never started therapy. People who are unemployed (26%) or retired (40%) were more likely to have stopped treatment, which raises the concern that some people go off treatment because of the cost – either they have no drug coverage, or their coverage runs out. (You may be able to get financial assistance if you contact the drug manufacturer’s patient support line.)

Most people starting a given medication will need to switch treatments at some point. The most common reasons for changing meds are unacceptable side effects, the drug isn’t effective enough, or personal preference (e.g. you prefer an oral drug rather than an injectable).

In the Great MS Meds survey, 52% of people were no longer taking their original medication (see Part 2 in this series). The most common drugs to stop, as you might expect, were the ones that have been in use longer: Copaxone, Rebif and Avonex. Copaxone was the most-prescribed MS drug for many years, which was reflected in the high proportion of people (31%) who had stopped taking it. The most common reasons for quitting were side effects, such as skin problems at the site of injection. The drug can cause denting or pitting where you inject, a condition called lipoatrophy, which reportedly occurs in about 45% of people taking this medication (Edgar and colleagues. Can J Neurol Sci 2004;31:58-63). People often commented that Copaxone seemed to stop working or wasn’t effective enough; that they disliked the need for daily injections; and that they preferred to take an oral medication.

Many people also switched off Rebif (22% of respondents) and Avonex (20%); the reasons were equally divided between side effects (such as flu-like symptoms), and a lack of effectiveness. Both of these interferons are injected, and some respondents said they were tired of using needles.

The least common medications that people stopped were Aubagio (3%), and Gilenya (5%). This may reflect that people find it easier to take an oral medication, and have not experienced severe or unacceptable side effects while taking these two drugs.

A common switch is from an injectable to one of the front-line orals, either Aubagio or Tecfidera; these switches are commonly because of side effects. Although Aubagio and Tecfidera came on the market at roughly the same time, considerably more people said they’d stopped taking Tecfidera (8%), mostly because of side effects (such as stomach pain, and nausea/vomiting). It should also be factored in that more people in the survey were taking Tecfidera (22%) than Aubagio (16%), so people may have been more likely to stop taking it.

Gilenya is a somewhat different case. It’s often prescribed when people don’t respond well enough to another treatment. People may keep taking Gilenya because they’re tolerating it well, the drug seems to be working, and they’re concerned about moving on to an infusion drug (either Tysabri or Lemtrada).

Switching medications can be a nuisance (doctor visits, insurance forms, blood tests, etc.). But the consolation is that most switches produce greater disease control (for reasons that aren’t entirely clear). And if your current medication produces too many unwelcome side effects, there are more tolerable alternatives. There isn’t one solution that’s right for everyone – but you can find a treatment you can live with.

What did the survey respondents say about their treatment? We’ll look at people’s experiences with their medication in Part 4 of this series.

Part 1 of the survey results
Part 2 of the survey results
Part 4 of the survey results
Part 5 of the survey results

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