I'll start by saying that many people are not on disease-modifying therapies (DMTs), for one reason or another. Maybe you have a form of MS that doesn't respond to current therapies, such as progressive MS. Maybe your doctor wants to switch you to something new and you are waiting to start that medication. Maybe you made the personal decision (hopefully with your doctor) to stop your DMT, for several different reasons.
On the other hand, many people have decided to be on a DMT, but end up not really taking it as prescribed. They get the prescription, fill the prescription and have their medications in hand. They know how to give the injection or take the pill, but somehow just don't take their meds. This is known as "non-adherence" ("adherence" means taking your medication as prescribed).
I'll be the first to admit it – sometimes it is a hassle to take my DMT. I'll also admit that sometimes it is so much of a hassle that I skip a dose here and there, telling myself that this is not the best idea, but it also is probably not the end of the world.
However, research presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS 2012) showed that missing more than the occasional dose could result in increased risk of relapse.
A study conducted in US, called Therapy Optimization in Multiple Sclerosis (TOP MS), followed almost 3,000 people who were either taking Copaxone or one of the interferons (Betaseron, Rebif or Avonex) to see what the impact of adherence was. Adherence was measured by how often people refilled their prescriptions. Here is what they found:
- 70.8% of people had medication on hand at least 90% of the time.
- Turns out that people who had medication on hand at least 90% of the time were about half as likely to have a relapse as those people who had filled 50% or less of their prescription.
In another US study, people who were non-adherent to their DMTs had a 38% higher chance of having a relapse than those who took their medication at least 80% of the time. Those who had discontinued their medication had a 54% higher risk than people taking their meds. The risk of MS-related hospitalization was 54% higher for non-adherent patients and 73% higher for people who had discontinued their DMTs as compared to adherent patients.
Why don't people take their DMTs as prescribed? We could all guess at the reasons, but a French group conducted a study among 602 participants to really find out what the reasons for not being adherent to DMTs were.
Here is what they found:
- 50% of patients who were taking a DMT had actually considered stopping their medication at one point or another. The primary reasons they gave were side effects (61%), because they were “fed up with it” (61%), or "felt weary" (57%).
- 16% of patients had actually stopped their medications. The reasons they gave were side effects (43%) and a lack of observable results (32%).
What do these results mean? Well, the French study shows us that other people aren't perfect, either. The non-specific answers of "fed up with it" and "feeling weary" probably sum up the feelings of many people who start skipping doses or stopping their DMTs altogether.
However, the studies on the impact of non-adherence are sobering. We may know people who say they stopped their medications and they feel great. You may actually be one of those people. While it is not guaranteed that people who stop their meds will have a relapse, the risk of relapse for people who stop their DMTs is clearly increased.
The bottom line is that if you have decided to take a particular medication, it may be wise to search your soul and commit to taking the medication as prescribed. If you are not going to take the medication or want to alter your regimen in some way, discuss it with your doctor and determine the best course of action for you.