Managing multiple sclerosis (MS) involves the consideration of many factors. The individual with MS, along with their health care team, should be at the centre of all decision-making. Friends and family can also play an important role throughout the treatment process. While the treatment goals and process may vary from person to person, it is crucial that – along with the proper lifestyle interventions – everyone treat MS symptoms early, monitor disease activity regularly, formally record responses to MS treatments and switch treatments rapidly, if need be.
The following sections are designed to help provide information you can use in developing a treatment plan that works.
BEING YOUR OWN BEST ADVOCATE
People living with MS play an important role in making disease-management decisions.
Taking care of one’s body and mind through rehabilitation and emotional support is a good start. To help with the many different and important decisions along the way, people with MS will interact with a multi-disciplinary team of health care professionals, which can include general practitioners (GPSs), neurologists, MS nurses, physiotherapists (PTs), occupational therapists (OTs), psychologists, psychiatrists and neuropsychiatrists, speech and language therapists, social workers, urologists, pharmacists and others.
Benefits of early treatment
It is important to start treatment as early as possible after diagnosis.
Studies suggest that frequent relapses and shorter intervals between relapse in the first two years can negatively impact early disease progression and may lead to more rapid deterioration.
Even in instances where disease activity may be going unnoticed, MS can continue to cause significant and irreversible damage in the central nervous system (CNS), leading individuals to experience new symptoms later on.
Once MS is identified, the goal is to reduce both the clinical symptoms (e.g., numbness, tingling, vision impairment, etc.) and the subclinical ones (i.e., the underlying changes in the CNS that may not be readily apparent) – which is believed to ultimately contribute to long-term disability, by starting therapy as early as possible.
MS treatment plans vary from person to person because each individual's symptoms and treatment goals may be different. Once diagnosed with MS, it will be important to establish your own personal treatment goals. Often, these may be developed through discussions and advice from health care professionals, family and friends.
Health care professionals will have certain treatment goals in mind:
- Controlling nerve inflammation
- Reducing the frequency and severity of relapses
- Slowing disability progression
- Managing symptoms
A person diagnosed with MS will have their own specific goals in mind:
- Adjusting to MS diagnosis
- Improving quality of life
- Continuing to work
- Raising a family
- Managing MS symptoms and medication side effects
- Not being a burden on family and friends
Personal treatment plan
Once treatment goals have been established, an individual and their health care professional may develop a personalized treatment plan that will likely consist of two parts:
- The use of MS-specific therapies and treatments (which are explored in more detail in the sections below).
- Additional therapies and treatments to help with symptoms that people may experience due to their MS (which are outlined in more detail in the LIVING WITH MS section).
How MS medication can help
There are many medicines available to help treat MS. Some are used to treat the underlying course of the disease by adjusting the way a person’s immune system is acting. Others focus on attempting to find ways around the problems MS can cause, and help patients regain some of the abilities it can affect.
MS therapies can be effective in managing several areas of the disease:
IMMUNE SYSTEM ATTACKS
The immune system is designed to help protect the body by attacking intruders such as viruses and bacteria. In MS, the immune system begins attacking the myelin sheath around nerve fibres in the brain and spinal cord.
Disease-modifying therapies (DMTs) are medications that work by preventing the body’s immune system from attacking and damaging the myelin. This helps reduce the frequency and severity of relapses and slow down disease progression.
Fortunately, not all relapses (or exacerbations) need to be treated. Mild sensory issues (e.g., numbness, tingling or pins-and-needle sensations) or bouts of fatigue that do not significantly affect a person’s daily activities can usually be left untreated. For severe relapses such as vision loss, extreme weakness or poor balance – which do interfere with a person’s mobility, safety or overall ability to function – most neurologists recommend treatment with corticosteroids.
- Corticosteroids are substances that work to actively contain the inflammation, which in turn helps to improve relapse symptoms and speed healing.
- They are usually given by an infusion or drip (which allows the medication to go directly into the bloodstream), with side effects that may include an upset stomach, irritability or difficulty sleeping.
- Used short-term (generally the treatment lasts 1-5 days), steroids are deemed relatively safe by most health care practitioners.
- Other treatment options include injections, infusions and oral pills.
Evaluating MS treatment options
Since MS affects each person differently, treatment tends to be very individualized. Finding the best treatment option for you is a complex decision that should be made together with your doctor, and it should take into account your personal preferences and individual lifestyle. You should also carefully consider how important the potential benefits are to you compared to how you feel about the potential risks.
As a starting point, here are a few things to consider:
Effectiveness, side effects and safety
MS is a complex and highly unpredictable disease that affects everyone differently.
Disease-modifying therapies (DMTs) are medications that target the inflammatory process of MS. DMTs appear to reduce the frequency and severity of relapses; the number of new lesions in the brain and spinal cord as seen on MRI scans; and slow down the accumulation of disability.
Each treatment option comes with its own safety and side effect considerations. The benefits and risks of each treatment option should be discussed with the MS team.
Types, forms and frequency of medication
When evaluating treatment options, there are choices between different types of medication, different forms of medication and different frequency with which the medication is taken.
Adverse events vary by treatment and each potential treatment should be discussed with your doctor in depth.
TYPES OF MEDICATIONS
Currently, there are a number of MS medication types authorized for sale in Canada by Health Canada.
AVONEX® (interferon beta-1a)
BETASERON® (interferon beta-1b)
COPAXONE® (glatiramer acetate)
EXTAVIA® (interferon beta-1b)
GLATECTTM (glatiramer acetate)
PLEGRIDY® (peginterferon beta-1a)
REBIF® (interferon beta-1a)
TECFIDERA® (dimethyl fumarate)
FORMS OF THERAPY
For relapsing-remitting multiple sclerosis (RRMS) and secondary-progressive multiple sclerosis (SPMS), with relapses, the three most common ways to administer DMTs are the following:
Infusion treatments are administered intravenously (into a vein) through a needle in the arm. They are generally given less frequently than self-administered therapies (i.e., pills or injections) and must be administered by a health care professional in a hospital, infusion centre or doctor’s office.
FREQUENCY OF THERAPY
The frequency with which medication needs to be administered is another important factor that should be considered when making treatment decisions.
Depending on the form of therapy selected, choices may range from:
- Daily (once or multiple times a day)
- Every other day
- Once every two weeks
- Once a year (for 3-5 consecutive days)
MS is typically diagnosed between the ages of 20-50, the family-building years. While women experience relief from MS symptoms during pregnancy, approximately 20-40% will have a relapse a few months after giving birth.
If someone living with MS is planning to start a family, it is important that they seek information on how MS treatments could affect pregnancy.
Most people with MS can travel safely with some advanced research and planning. Having a discussion with your doctor can help establish whether safe travelling with medications is possible and what preparations might need to be made before leaving. Here are some things to keep in mind:
- If travelling with injectable medications within Canada, keep all medications in their original packaging, showing the prescription label, and make sure to request a letter from your doctor describing the medications and medical devices you need.
- Requirements for the U.S. are a lot stricter, due to forgery concerns, and so all medications must be in their original packaging and have professional, pharmaceutical pre-printed labels clearly identifying the medication.
- It is important to let the airline know, at the time of booking, what assistive devices (e.g., leg braces, wheelchair, walker) you use and if you will need help on the plane.
Staying active is beneficial and travelling is a good way to get out and get moving. According to health experts, the biggest threat while travelling is not some rare disease but a flare-up of an already existing medical condition. Therefore, before travelling:
- Make sure to see your doctor in order receive all documentation, prescriptions and medical care you need, as well as any vaccinations, if travelling to an exotic destination.
- Ensure you have enough medication to last you the length of the vacation as well as an extra week.
- Wear a MedicAlert bracelet or necklet or ID bracelet to alert first responders and other health care professionals to your condition and the medications you take.
Getting the most out of a treatment plan
Following the treatment plan that you and your doctor have come up with together is the best strategy for managing your MS. Along with healthy eating, regular exercise, rehabilitation and other complementary therapies, sticking with the disease-modifying medication your doctor has prescribed is an important part of that plan.
Disease-modifying therapies (DMTs) are a class of drugs that influence the underlying disease activity (i.e., may lessen inflammation, reduce the frequency and severity of relapses and reduce the number of new brain and spinal cord lesions) – they do not treat MS symptoms, cure MS or make people feel better. Sticking with DMTs over long periods of time may be challenging for many people since they may not be able to feel them working at all; however, DMTs can be important to help slow down the progression of disability.
Because taking DMTs regularly over a long period of time can be challenging, it is important to understand their role in the overall management of MS and to be aware of the obstacles that can make it harder to stick to the treatment plan.
Staying on track involves several key elements: remembering when to take medication, monitoring symptoms over time, recording relapses, overcoming medication fatigue and learning injection techniques.
REMEMBERING WHEN TO TAKE MEDICATION
- Take your medication, at the same time every day, along with another daily activity – eating breakfast, brushing teeth, going to bed, etc.
- Set an alarm clock or a reminder on your smartphone that goes off at the same time every day or make a note on a calendar.
There are many widely available smartphone medication adherence apps that can help patients remember when to take their medication.
- Keep a journal of your MS symptoms. Write in it every day or when new symptoms appear. This journal will be helpful when discussing a treatment plan with your health care team.
There are many widely available smartphone apps (iPhone and Android) that can help with recording symptoms.
Sometimes a person may feel fine but then later experience an episode of worsening symptoms.
- These episodes are called relapses, exacerbations, flare-ups or attacks, and they may reveal important information about the status of someone’s MS.
- It is important to keep track of when these relapses occur, how long they last and what symptoms are experienced. By doing so, doctors can learn what is happening.
Taking disease-modifying medications over long periods of time can be challenging for MS patients. For some people, medication may perhaps feel like an unwanted reminder of their disease. It is no surprise then that MS patients may suffer from medication fatigue, described as a decrease in the level of commitment to adhere to the prescribed MS medication. People may get tired of taking their medication, but it is important to make sure that these emotions don’t get in the way, as taking medication as recommended can help preserve health and improve quality of life.
While injections are a common form of administering MS medications, many people hate needles and are afraid and anxious to self-inject.
Education on injection techniques can be an effective first step in building the self-confidence of MS patients and reduce their fear to self-inject.
Information about injection techniques can be obtained from qualified health care professionals or through the support programs offered by the manufacturers of the respective medications.