Therese Burke has been working as a Clinical Nurse Consultant in MS for over 10 years and as a researcher in the MS field for over 15 years and is based in a major Sydney Hospital. Therese is currently working on a PhD centred around what it feels like for people living with RRMS (relapsing-remitting multiple sclerosis) in the modern day with so much information, so many treatments and so many choices. Therese has a passion for educating people and families living with MS, particularly at the start of the journey and has co-authored an international paper on the evolving role of the MS Nurse.
Treatment Compliance: Pros & Cons
By Therese Burke, MS Nurse
Well, the short answer is that no treatment will work to control your MS if you don’t take it. It really is that simple.
The long answer is much more complicated, because, let’s face it, there are 1001 reasons to not take your medication as you should or when you should. Some of these reasons are trivial and transient, but some of these reasons are far more serious and important. And at the end of the day, all of these reasons, trivial and serious, can come between you and your MS. So let’s talk about some of the things that may affect your compliance with what your Doctor or Health Care Professional (HCP) has recommended for you.
There are many medications approved in Australia today to treat RRMS, but I am also talking about the medications for managing symptoms of MS, which applies to all types of MS, including progressive MS. Most medications have a certain “half life” which determines how often they need to be taken depending on how quickly or slowly they exit your system. That’s why some medicines are taken twice or more a day and some are taken weekly or less often. In order to be effective they need to be taken as directed to help keep the blood levels up and the desired effects ongoing, taking more than the recommended dose can be toxic, and taking less than recommended can render the medication ineffective and useless. So, it is about more than just taking the medication, taking it exactly as directed is vitally important.
Before making a decision on your MS treatment, your Neurologist and other HCPs such as MS Nurses, consider many factors. These include your family planning stage of life, immediate pregnancy plans, lifestyle, social supports, potential side effects, stage of disease and recent relapses/disease activity, safety monitoring requirements, access to facilities, your other medical conditions and your preferences for treatment to name a few. These factors are all important to successfully commencing and staying adherent to medication regimes.
Compliance with medications is a fairly solitary endeavour, when people take their advised medications as directed. Adherence to medications and treatment plans is a more active process, it implies a belief in the process of sticking to something and collaborating with your HCPs 1. You can only do this if you are fully invested in the purpose and reasons for certain decisions, so it is vitally important to let your HCP know if you have reasons that prevent you taking the medications or concerns/questions that you may have. You are a very important part of decision making, and integral to the success of your treatment.
Common reasons for people living with MS not adhering to their medications are plentiful and include lack of belief in the effects of the medication, lifestyle factors, actual side effects, worry about potential side effects and simply forgetting. We know that adhering to MS treatments results in optimal function, cognition and quality of life 2. On the other hand, non-adherence results in more relapses, progression of MS, more visits to the Doctor and higher MS medical costs. It is always a good idea to let your HCP know if side effects develop so that appropriate management plans can be commenced- many of the common side effects will have effective strategies to help you. We also know that mood and anxiety can have an effect on how importantly you view medication adherence and whether you actually take the medication as directed4. If you need extra help in this area, please make sure your HCP is aware so that you can discuss what can be done to assist you.
The other part of relapsing remitting MS that is tricky to navigate is the fact that you can be so “up and down” in your symptoms and even enjoy long periods of remission from symptoms or disease activity entirely. This can lead you to think that medications are not needed or that it is OK to stop taking them3. This is not the case with MS, where taking the disease modifying therapies is rather like an insurance policy to prevent issues in the future. Continuation of medications during remission is integral to positive long term outcomes. Please discuss this with your Neurologist or HCP if you feel that you don’t have the information or education you need to understand the future implications of your current medication adherence.
It is also important to think about your other medications, not just the MS related ones. Your GP or Pharmacist will be able to give you an overview of how they all fit together if you are unsure. And just as importantly, part of the global drive in wellness for people living with MS is to maintain good overall general health…and that means looking after every part of your health. This includes maintaining a stable and healthy weight, good nutrition, stopping smoking, good sleep hygiene, looking after heart health (within range blood sugar and cholesterol levels and a healthy blood pressure), regular and appropriate exercise, management of mental health and stress levels, work/life balance, regular breaks, social stimulation/engagement and a positive attitude. Put all of these things together with the right medications for you and you really have the best chance of successfully living your life to the full. Your GP can also help with effective general healthcare strategies to help put you in the best place possible. A life that just happens to include MS, not a life ruled by MS.
A final word to openly discuss any medication or treatment related issues with your Neurologist or treating GP, who need to know exactly what is happening when you leave the clinic. They want the best outcome for you and this happens with open and honest communication…and this applies to all areas of your health and wellness.
1. Namey, M. (2007). Promoting adherence to complex protocols. In J. Halper (Ed.), Advanced concepts in multiple sclerosis nursing care (2nd ed., pp. 91-100). New York: Demos Medical Publishing
2. Caon et al. (2010). Injectable disease-modifying therapy for RRMS: A review of adherence data. Journal of Neuroscience Nursing, 42(5S), S5-S9
3. Hancock et al. (2011). Exacerbation history is associated with medication and appointment adherence in MS. Journal of Behavioral Medicine, 34(5), 330-338.
4. Bruce et al. (2010). Treatment adherence in MS: association with emotional status, personality, and cognition. Journal of Behavioral Medicine, 33(3), 219-227.