Difficulties Adhering To Treatment
There is never a good time to be diagnosed with multiple sclerosis. However, when you look at the history of the disease, from when they first figured out that MS was a disease to today, we are, without question, at the best possible moment. Even in the two plus decades since I’ve been diagnosed, science has jumped leaps and bounds when it comes to treatment (I’m pretty sure if I had access to the treatments that are available today back when I was diagnosed, I would not be disabled today). While MS treatments can be very effective, having access to said treatments is only part of the equation in effectively fighting MS. Sticking with the treatment, taking it when and as often as you should, can be a significant issue for many people.
The importance of taking your medication
I was going to add some references here, but I don’t want to insult your intelligence. It’s pretty obvious that medication only works if you take it. That means not only taking it when it’s convenient, it means taking it on the schedule and at the dose prescribed. If you don’t do that, you can’t expect it to be as effective as it could be. I am hoping this is common sense. Even if you can’t always take it when you should, I hope you at least understand that if you don’t take it as prescribed, then it won’t work.
Treatment adherence isn't always that easy
Knowing you need to take medication as prescribed and actually doing it are two different things. A report by the World Health Organization once found that across chronic illnesses, only around 50% of people adhere to their treatment recommendations.1 So this is a widespread issue, not only for those with MS.
A recent study in the Journal Of Neurology looked at the adherence rates of those specifically with MS, finding that around 74% (roughly) adhere to their treatment as prescribed. By reviewing numerous other studies, they were also able to identify several key factors influencing whether people adhere to their treatment or not:2
- Gender - Men were found to have better adherence than women.
- Age - They discovered that the older someone was, the greater the chance they adhered to their treatment.
- Education - Those more educated patients did not follow their treatment guidelines as closely as those with less education.
- Disease profile - They found that those taking a treatment for a shorter period of time were more likely to adhere to it.
- Disease information - Those well-informed about their disease and their treatment were more likely to follow their treatment plan.
- Disability - Their review of these data was mixed, however, most studies showed that the higher the disability, the more difficult it was to adhere to treatment.
- Cognition - Not surprisingly, they discovered those with cognitive issues (such as memory problems) had more difficulty adhering to their treatment.
- Depression - Those diagnosed with or exhibiting symptoms of depression were less adherent.
- Alcohol consumption - They identified that those who consume more alcohol than others had a greater chance of missing their doses.
- Medication-specific issues - They identified that conditions specific to each medication could cause issues. For example, a lot of folks get anxiety when taking injections, which can have a huge impact on whether they take it as prescribed. The same goes for certain side effects.
I’m guilty too
During my life with MS, I have, at times, had trouble adhering to my treatment plan. My first treatment, Avonex, required a painful once-a-week intramuscular injection with no autoject-type device. It also gave me flu-like symptoms for 24 hours after taking it. Sometimes I’d go to take it and just couldn't do it. I eventually moved on to Copaxone when it was a once-a-day injection. I would of course miss days because I either had injection anxiety or because I was still young and had a busy life.
I’m grateful to be on Tysabri these days, not only because I feel it’s more effective, but because I only need to deal with it once a month. I’ve had times where I haven’t taken this on time either, because sometimes life gets in the way. It’s obvious that sticking to our treatment plan is important, but there are a lot of factors that conspire against us. Hopefully, by talking about the issue, it can reinvigorate all of us to stick to our treatment plans.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?