In the UK, there is now a wide range of disease modifying drugs (DMDs) that have been approved for use in the NHS for people with relapsing MS.
Each drug offers a different combination of benefits and risks. You may be looking for a general introduction to DMDs or have been given a choice of treatments. In either case, deciding whether to start treatment and if so, which one, can be a difficult decision to make.
The decision to start treatment with a disease modifying drug is very personal. This guide aims to help you think about your own views, preferences and attitude to risk. Your personal values and circumstances may make a big difference when deciding which treatment is best for you.
The final decision to start on a DMD should be made in partnership with your MS team who can advise on which treatments might be right for you and your MS. Knowing about the available options and what is important to you, will help you make an informed choice.
Considering what is important to you
It is up to you how much you want to be involved in choosing your treatment. You might want your neurologist and MS nurse to take the lead or you might prefer to be very involved.
Starting any DMD is a longterm commitment, so it is important you have as much information as you feel you need to make your decision. Your MS team will have knowledge and experience in managing MS, but you are the expert on your own life and what matters to you. Bringing together your preferences with the experience of your MS team can help you make a choice that it is the best blend between the effectiveness of the drug and how well it suits your circumstances.
MS Decisions aims to help you explore topics that you might want to think through when making your decision. As you go through the Guide, you might want to think about:
- What is important to you?
- What do you want to achieve by taking treatment?
- How do you usually make decisions? On your own or do you often rely on advice from others?
- Are you a risk taker or more cautious?
- Do you like to get background information and weigh up the pros and cons or do you prefer to go forward based on gut instinct.
You might like to think about your choice and your options alone. Alternatively you may like to consult others and consider taking their views into account. You might discuss your options with family, friends, your MS team, or you might want to talk through your thoughts with someone you don’t know, but in confidence, such as the MS Trust Information Team.
Your personal circumstances and commitments
Starting any kind of medication is a commitment. At the very least you need to take it at the prescribed times. However for some of the DMDs there are additional commitments you might need to make. Some require you to go to the hospital for treatment, some have regular blood tests and others might need to be stored in a particular way.
Starting treatment with one of the DMDs is likely to have some impact on your life. You know your circumstances, your commitments and how much flexibility you have in your schedule. Below are a number of topics and questions you might think about when you consider your treatment options. They will help you work out how much these factors may influence your choice.
Are you considering starting a family soon? As none of the DMDs are recommended for use during pregnancy, this will probably have an impact on when you start treatment. You would need to discuss your options in more detail with your MS team.
If you already have children, what are their needs and schedule? Do you have a support network that could help you if you need to attend clinics at a time when you also have family commitments?
If you travel a lot with work, work unusual hours or on shifts, what impact might that have? Could you take your doses at the right times? How easy would it be for you to attend regular check-ups?
You may not have told your employer about your MS diagnosis, especially if your MS is not having an impact on your work. However if you need time off for treatment or tests, you might need to think about how you can arrange your appointments, or find a way you can have the necessary time off without raising concern if you are not yet ready to tell people.
If you are away from home for extended periods such as being in the armed forces or working on an oil rig, could you make sure you take the doses when you are supposed to? Would it be a challenge to take a drug with you that needs to be stored at a particular temperature or requires you to carry and use needles? If you need regular appointments you might need to make special arrangements for these to happen away from your usual MS team, so you might need to discuss how you could arrange this.
Do you like remote or extended holidays? Or are you planning on going travelling for a long period? There are some drugs that might be more convenient for your lifestyle, but you might need to make some arrangements with your MS team to ensure you can take your medications with you and continue treatment uninterrupted. Taking doses at the right time and spacing them appropriately can also be an added challenge when you are crossing time zones although your MS team can provide guidance and there are mobile phone apps to help you keep track.
If transport is a problem, for instance if you rely on public transport or for someone else to take you to appointments, you might like to consider how easy or cost effective it would be to get to the clinic where your treatment or monitoring might take place.
Do you have any other health conditions? It is important to let your MS team know about any other conditions you may have. If you have other health issues or take certain drugs some of the DMDs may not be suitable for you or you may need to have extra tests or monitoring. You may also want to consider whether a potential DMD side effect might aggravate your pre-existing condition.
Storage and supply
As some of the drugs need to be stored in the fridge, you might need to consider if this is possible for you. Do you have enough space in your current fridge? If you share a house with others, you may only have limited space or you might not be comfortable storing your drugs in the fridge. If you have small children in the house, could you store your drugs in the fridge on a shelf where they would be out of their reach?
Weighing up the pros and cons of treatment
The pros and cons of each of the treatment options should form part of your discussion with your MS team. Each person will have very different ideas of what they consider to be pros or cons. There are a number of different benefits, risks and potential side effects that are associated with each of the DMDs which you should know about so you can consider which factors are pros or cons for you. For example you may consider the way in which you take a particular drug a benefit or a drawback.
Sometimes there needs to be a trade off. To receive the benefits of a particular treatment you might need to be willing to accept the possibility of particular risks or the inconvenience of going for regular treatment or tests.
Benefits are those things that you would consider to be an advantage or what you hope to gain from taking the drug. The main benefit associated with the DMDs is their ability to reduce the number and severity of relapses. The effect may not be immediately obvious as it may take up to six months for the drug to become fully effective. It can be hard to know how many relapses you would have had without treatment to compare with how you are on treatment. However, you should notice a difference in your relapses over the longer term once you are on treatment.
Side effects and risks
Side effects are unwanted symptoms caused by a medical treatment and they can happen with any drug. Even something as everyday as aspirin can cause side effects in some people. Side effects may possibly but not definitely occur and they are usually reversible, meaning if you stop taking the drug they will soon go away. Generally, the side effects of the DMDs are considered to be relatively mild and manageable in those people that experience them, often easing over time as the body adapts to the presence of the drug. For some people side effects can be inconvenient and intrusive enough to change or stop treatment.
There are some more serious side effects and risks associated with the DMDs. The risk of these is low, and they are rare and not likely to happen in most people. However, they are significant events if they occur. They can be life changing and they might not be reversible, even if you stop taking the drug. The risk of these happening should therefore be considered carefully in your decision. Some DMDs are considered to be more effective at reducing relapses, but as a result may have more marked, and potentially serious, side effects and risks associated with them than some of the other DMDs. Although you will have regular monitoring so your MS team can intervene quickly should problems arise, you may still feel that this is a risk you are unwilling to take. Or you may feel that the benefits of these treatments outweigh the risks.
Guidance from your MS team
Your MS team will tell you if you are eligible for DMDs and if so which ones would be suitable for you and your MS. They will make recommendations based on how active your MS has been, the number of relapses you have had and how these have affected you. When prescribing a DMD, your MS team has to work within NHS eligibility criteria which define the type of MS the drug can be used for.
Like you, your MS team will have their own opinions and views on the best course of action to take. They may weigh up the pros and cons of each option in a different way to you and will have a different perspective. Their own views of risks and benefits may influence how cautious their recommendations are. Some might suggest a riskier course of action for bigger benefits and some may have a much more cautious approach. Their views will be based on their own experiences and knowledge of MS.
Your MS team is there to support you in the management of your MS, so do take account of their advice but feel free to ask them questions or challenge their choices if you have any concerns. You can find sample questions to ask in questions to ask your health professionals.
The goal of treatment
DMDs work with different parts of the immune system to prevent the inflammation caused by MS. This helps reduce the number and severity of relapses. Inflammation in MS can also lead to permanent damage to the nerves in the brain and spinal cord. Reducing this inflammation may help to reduce the build-up of disability over time.
Inflammation does not always result in a relapse or any visible symptoms. This silent activity may mean that although you are feeling well, there may still be changes caused by your MS that can only be seen on a brain scan. Treating the visibly active (relapses) as well as the silently active aspects of MS is a new goal that is emerging in MS treatment. This goal is often called no evidence of disease activity (NEDA). The aim is to reach a point where you are free of visible (relapses) and invisible (changes seen only on brain scans) MS disease activity.
The right time to start treatment
There is increasing evidence that it is important to begin treating relapsing remitting MS early. This means starting DMDs soon after diagnosis. However, later is better than never, so even if you are considering DMDs after having had MS for some time, you could still benefit as the treatments may help prevent further damage from occurring.
It is important to raise the topic of starting treatment soon after diagnosis with your MS team. If it isn’t mentioned in your appointment, it is ok for you to bring it up.
The consequences of no treatment
As MS is such a variable condition it is difficult to know how your own MS will develop, predict how many relapses you will have and when these will occur. If you have had very few relapses or you currently feel well, you may feel that you do not want to start drug treatment. You may want to look to other options or you may wish to continue life as you were before.
As explained in the section above, relapses can only be the tip of the iceberg when it comes to MS, and there can be other activity going on beneath the surface that you might not be aware of. Without DMD treatment you may be at risk of further relapses and permanent nerve damage.
Some people decide to try managing their MS through lifestyle changes to see if, for example, improving diet, exercising or taking complementary medicines might help. Ensuring you are eating a balanced diet, getting good exercise and not smoking can help you be as healthy as possible and reduce your risk of developing other health conditions too. However, there is no evidence that these lifestyle changes alone will make a difference to the course of MS. It is generally accepted that these lifestyle changes are complementary to drug treatment and part of a holistic management of MS, but they are not a substitute for drug treatment.
It is important to remember even if you decide you do not want to start treatment now, you can change your mind later. If your MS team has suggested you start DMD treatment now but you would rather wait and see what happens or would like to try something else first, discuss your thoughts and decision with them. You can perhaps come to an arrangement whereby you can test out your way first and review with them after a set period, to see if that is working for you or if you perhaps wish to reconsider your DMD options.
How to prepare for appointments
To get the most from discussions with a neurologist or MS nurse, it is helpful to prepare in advance. You might also find it helpful to take a friend or family member along with you to appointments. They can support you or take notes, to help ensure that you ask all of the questions you want to ask and get the answers that are important you.
You can also explore and compare the DMD drugs in the interactive decision aid.