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.
Options, options, options
By Therese Burke
Twelve years ago in Australia, patients with Relapsing Remitting MS had few choices in regards to relapse prevention treatment, and if problems arose or the medication was not working to control MS relapses, usually there was switching amongst the various injections. However, if the change to another injections of interferon or Glatiramer acetate didn’t work, sadly, there was not much that could be done. Fast forward ten years and the available treatments for MS (and hopefully very soon, for progressive MS) are a minefield of options, decisions, monitoring responsibilities and side effects. This is especially complicated for the newly diagnosed who previously had no knowledge of any MS therapies and all of a sudden are confronted with twelve drugs, some similar but different, many ways to take them and side effects which potentially blow your socks off in terms of severity. How does the person living with RRMS make sense of the available options and come to a treatment decision?
Firstly, just because there are 12 medications to treat RRMS doesn’t automatically mean that they are all the right one for you, or appropriate in your particular case. Remember that every case of MS is different in some way and has its own special features to consider. Usually the Neurologist or MS Nurse will guide you to a selection of all of the available treatments appropriate for you, taking into consideration your age, your sex, your family planning needs, your other medical conditions, your recent relapse history and your disease severity. Generally speaking, there are three groups of MS medications: injections, oral medications (tablets and capsules) and intravenous medications (hospital visit for an infusion). Usually injections are prescribed for people with milder and more stable disease, oral medications for mild to moderate disease patterns and intravenous infusions for more severe or unstable MS disease. However, there may be individual reasons why some groups of medications are considered for you and some not. Your Neurologist and MS Nurse can provide you guidance in this area.
Generally speaking, injections may still be used for people who have stable RRMS, have very mild disease or for people who are very risk averse and prefer a low side effect option. Injections are a viable option for some people, once injection technique is mastered, monitoring is simpler and there are several categories of injections available in Australia, all with slightly different injection days and regimes.
The introduction of the oral treatments for RRMS marked a time of rapid change for people living with RRMS, and there are still more oral treatments to come in the pipeline. A welcome change from administering injections, it must be remembered that the oral medications do come with some caveats. Pregnancy is a very real concern with some of these medications and appropriate family planning (birth control) measures must be undertaken. Most of the oral treatments require diligent monitoring with blood tests and other tests before and after commencing treatment, but these can usually be managed simply with some forward planning. Potential side effects vary according to the type of oral treatment but once again, these can usually be managed well with education and planning.
Intravenous treatments are usually reserved for moderate to severe cases of RRMS, but once again, this can vary in special circumstances and the location of your MS lesions in the brain and spinal cord. Potential, more serious side effects require diligent monitoring and adherence to safety programs for successful and safe treatment; they usually require a special type of commitment from the patient to work with the Neurologist and MS Nurse to ensure the best and safest results.
Although it seems in recent years as if there has been an explosion of new MS treatments (in many ways, there has been), it must be remembered that in order to have safe and effective options, there needs to be collaborative team work between the person living with RRMS and the MS care team. Now, more than ever, communication needs to be clear and consistent and the patient has a very defined and strong role to play in their own care. This includes taking treatments on time, having tests such as blood tests and MRIs on time, reporting side effects promptly and attending scheduled Neurologist appointments.
Most people will have a group, or two groups of medications presented to them to choose from. Rarely, but in some special cases, you may be strongly advised to take a single medication in your case. For those with a choice to make, it is helpful to write down your own list of pros and cons for each medication, because every individual situation will be very different. Read through the brochures, ask questions if something is unclear and rate each medication out of ten for meeting your own needs and what you are able to commit to. A medication is only going to work to control your MS if it is taken regularly and on time, so you need to be honest with yourself and your MS care team about what you can manage in your life. Find someone you can share the load with, your partner, friend or other family member that you can bounce ideas off and look over the medication options with you. If you find the Neurologist appointments daunting, then take this person with you as much as possible as it is always helpful to have another pair of ears and another perspective on your side. Sometimes just the sheer volume of information can be overwhelming and we understand this can for frightening for the person with MS and their loved ones too.
Options, options, options means truly individualised care, where the right medication for the right patient in the right circumstance can be prescribed. This means that your particular case of MS can be treated in the best possible way with individualised treatment selection. We are so fortunate in Australia to have so many treatments available for RRMS and covered by the PBS. But for any medication to be a success, it must be a result of time investment by the patient and the MS care team. It must suit the lifestyle and beliefs of the patient and it must be a treatment that is accessible and viable for the lifestyle of the person living with MS. The afterwards safety monitoring is also of prime importance and involves a commitment to blood tests, other tests and clinic visits which cannot be underestimated. Options, options, options, means we live in great times where the future of MS looks entirely different to even just a decade ago.