Eligibility for treatment
I have relapsing remitting MS, can I have a DMD?
If you have been diagnosed with relapsing remitting MS and you are experiencing relapses, you may be eligible for a DMD. Whether a DMD is appropriate for you and which ones you might consider will depend, in part, on how active your MS is at the moment. Have a look at the decision aid to learn about the different drugs and discuss your options with your MS team.
I have secondary progressive MS, can I have a DMD?
The main reason for taking DMDs is to reduce the number of relapses you have. If you have secondary progressive MS and you are continuing to have relapses, then it may be appropriate to take a DMD. However, none of the DMDs has been shown to reduce the progressive disability which happens independently of relapses, so they are not prescribed for people with progressive MS who do not have relapses. Discuss your options with your MS team.
I have clinically isolated syndrome, can I have a DMD?
Research suggests early treatment of clinically isolated syndrome (CIS) with DMDs can delay conversion to MS. However, as not all people who have CIS will be diagnosed with MS, your MS team may be reluctant to start what may be an unnecessary treatment too early. If you have been diagnosed with CIS and you're considered to have a high risk of developing MS (usually based on your MRI scans) then you may be eligible to start taking a DMD.
Is there a choice of treatment?
In the UK, there is now a wide range of disease modifying drugs that have been approved for use in the NHS. Your MS team can tell you which drugs you are eligible for and from that, they may give you a choice of options or they may tell you that one drug would be better for your MS than the others. The choice of whether to start treatment or not, is still yours to make.
Are my options for treatment different depending where in the UK I live?
Although most of the DMDs are available across the UK, there are some differences in the availability and eligibility criteria between Scotland, England, Northern Ireland and Wales. Select the country where you live when you use the decision aid and check the individual drug information for the criteria where you live.
I have researched the DMDs but have been told I am not eligible for the one I would prefer, why?
All the treatments have strict eligibility criteria which depend on how active your MS is. It may be that your MS is not active enough (as defined by the number of relapses you have had, how severe these were and what your MRI scans show), to qualify for a particular treatment. You should discuss your situation with your MS team and ask them for the reasons why they do not think a specific treatment is suitable for you.
When is the right time to start disease modifying drug treatment?
The decision to start treatment is very personal, but 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.
Am I putting myself at risk if I do not start a disease modifying treatment?
MS is such a variable condition it is difficult to know how your own MS will develop, predict how many relapses you may have in the future and how severe and disabling they might be. However, without DMD treatment you may be at risk of having further relapses and permanent nerve damage from silent activity. By starting a DMD you will be reducing this risk.
How do I decide which treatment is best for me?
You can use the information within MS Decisions to help you consider your options. The guide to decision making will help you decide what is important to you and the decision aid can help you compare the different drugs. Your MS team can advise on which treatments you will be eligible for and which might be most suitable for you. They will consider factors such as how active your MS is, the number of relapses you have experienced in a specified time frame and the risks and benefits of each drug.
How do I know these drugs are safe and effective?
All of the DMDs have undergone robust clinical trials to demonstrate how safe and effective they are. The authorities review all of this information before a drug is given a license and allowed to be used. Once a drug is in general use they continue to be monitored to make sure they remain safe and effective in the long term.
Is there information about the long-term use of these drugs?
Some of the DMDs have been in use in the NHS for up to 20 years and some have only recently been made available. For all of them there is the information gained from the clinical trials and more is being learned all the time. You can read detailed information about each of the drugs and the latest findings about their use on the drug information pages.
I'm really scared of needles, can I still go onto a DMD?
The drugs that are self injected use a device that automatically performs the injection and also means you don’t see the needle, a bit like the pens used by people with diabetes to inject insulin. Your MS team can show you these devices, but if you do not want to inject you may also be eligible for one of the treatments taken as a pill.
Do these medicines contain animal products?
Gilenya (fingolimod) and Tecfidera (dimethyl fumarate) contain gelatine. You may wish to read the patient information leaflet, or ask your MS nurse or the drug manufacturer to check that the drug does not contain any other products or is manufactured using a technique that is not compatible with your beliefs.
Effects of treatment
What are the benefits and risks of treatment?
DMDs work by interacting with different parts of the immune system to treat the inflammation caused by MS, reducing the number and severity of relapses as well as damage to nerves that may not produce any visible symptoms. Some of the DMDs are more effective at doing this than others, but may have potentially serious risks associated with them. You can read more about the benefits and risks of treatment in the guide to decision making and the individual drug information.
Will treatment improve my symptoms?
Will treatment stop me becoming disabled?
There is now some evidence that the DMDs can slow the progress of the disease which is usually measured by the build-up of disability over time. However, these results are from studies that have been run for less than 10 years. The effect that these drugs have over the longer term is not yet known and currently there is no evidence that DMDs delay the onset of secondary progressive MS. You can read more about the longterm effectiveness of DMDs in the A-Z entry for DMDs.
Will I experience side effects from these treatments?
Although there are a number of recognised side effects associated with each of the DMDs, not everyone will experience them. Even if you do experience side effects most of them are mild and manageable and they often ease over time as the body adapts to the drug. Your MS team can discuss ways of managing any side effects you experience.
Will I have to pay for the drug?
If you are eligible for NHS treatment, you will not have to pay for the drug itself. In England, you may have to pay the standard prescription charge.
How will I get my supply of the drug?
Depending on which drug you are prescribed, you may either collect it from the hospital pharmacy, receive it in hospital as a day patient or inpatient, or have it delivered to your home or agreed address by a designated home delivery company. Your MS team can let you know what the local practice is.
What support will I receive when starting my treatment?
If you are starting an injectable treatment you will be supported by your MS Nurse, or a support nurse who has been trained to teach you how to inject the drug. If you have chosen a DMD pill you should receive information and explanation from your MS nurse about how and when to take the medication as well as the details of who you should contact if you require any further guidance or support. Your MS team will also make regular appointments with you to check how you are doing on treatment.
What do I need to know about injecting myself?
It is important to understand how to give an injection which includes: knowing where on your body to inject, how to prepare the injection, correct injection technique and any devices which might be available to help give the injection. You should also know how to dispose of the needle and any drug waste safely, how to store your drug supply and how to manage any side effects you may experience. All this can be discussed with your MS team.
Will I need to go to hospital for DMD treatment?
Tests and check-ups
Will I have to have any further tests?
Depending on which DMD you are prescribed you may need to have regular MRI scans, and/or regular blood and urine tests. These tests are detailed in the individual drug information pages.
Will I need to have regular checkups?
For all of the DMDs you may need regular appointments to have tests and for your MS team to discuss how you are getting on with treatment. How often these occur will depend on which DMD you are taking and the procedure within your local MS team. You can ask them for further details.
How will I be checked to make sure the DMD is doing no harm?
You will have regular appointments with your MS team who will take a history of any symptoms or side effects you may be experiencing as well as organising MRI scans, blood and urine tests to check that the treatment is doing you no harm.
Living with treatment
Is it OK to travel when taking DMDs?
You can travel if you are prescribed any of the DMDs. To ensure that you travel through security and borders with few problems, it is advisable that you get a letter from your doctor or MS nurse to state the medication is yours and why you are taking it. You should also carry all of the medicine and equipment, such as injection devices and needles, in their original labelled packaging. Some drugs need to be kept at a particular temperature so if you are travelling somewhere warm you may need to take a cool bag with you. If you are travelling to countries that require vaccinations, you will need to discuss with your MS team when you should get these done and if your treatment will have any impact on your level of protection. Additionally, you might need to plan for taking your doses at the right time, for example you might need to schedule your travelling between infusions or ask your MS team for guidance on making sure you take pills or injections at the right times if you have crossed lots of time zones.
Can I take a break from treatment?
It is not recommended that you take a break from treatment once you have started as keeping a stable level of drug in your body is important for it to work properly. There may be times when you or your MS team think taking a break might be appropriate, for example if you are hoping to get pregnant, but you should discuss the potential benefits and risk of doing this with your MS team before you stop taking your drug.
Can I miss a dose of my treatment if I am going on holiday?
It is not recommended that you miss a dose of your treatment, as this will change the level of drug in your body.
How long do I need to be on treatment?
DMD treatment is usually a longterm commitment measured in years, but you will be regularly reviewed by your MS team to see if the treatment is still effective for your MS. Your MS team will also assess, how you are managing any side effects and will check for complications. After the review, you can decide, in discussion with your MS team, what you need to do next.
How will I know if the DMD is working?
As the DMDs work primarily by reducing the number of relapses, you should experience less relapses, when compared to the period before you started treatment.
Pregnancy and treatment
Can I start treatment if I am thinking of becoming pregnant?
There is a limited amount of information available about the effect on conception when the mother is taking DMDs. As the effect is unknown, it is usually advisable not to start treatment if you are considering starting a family soon, but you should discuss your own situation with your MS team to determine what course of action is best for you.
I am a man with MS, can we try for a baby while I am on treatment?
Currently, there is very limited information concerning the impact of most DMDs on conception or the unborn child when the father is taking medication. The available information suggests that the use of some of the DMDs by the father has no adverse effect on the baby, and that there are no differences between babies born to men with MS taking some of the DMDs and those that were not. However if you are taking Mavenclad you must not father children within six months of taking a treatment course. As there is no published data on some of the other DMDs you should discuss your situation and treatment options with your MS team before trying for a baby.
Can I take DMDs during pregnancy?
DMDs have not been studied in pregnant women and so none are classified as safe to use during pregnancy. Consequently women are usually advised to stop treatment. Many women find that their MS improves during pregnancy and studies have shown relapse is less likely. You should discuss any plans for pregnancy with your MS team, so they can advise you when and how you should stop treatment.
What should I do if I become pregnant while on treatment?
If you find yourself pregnant while taking a DMD you should contact your MS team to discuss whether or not to come off of treatment.
Can I breastfeed if I am taking a DMD?
DMDs have not been studied in breastfeeding women and there is limited information available. As the effect on the child is unknown, you should normally stop treatment until you have finished breastfeeding. Some people who are at significant risk of relapse may choose to discontinue breastfeeding and opt for bottlefeeding so they can begin DMDs again.
DMDs and other treatments
Could the treatment cause problems with any other treatments I am taking?
Some of the treatments can potentially interact with other medications, so you should inform your MS team of any other prescribed medication, including contraception, you may be taking and discuss the potential implications on your DMD options with them.
I take over the counter vitamins and supplements, are there any problems continuing with these?
There is little information about combining over the counter vitamins and supplements with DMD treatment but it is generally thought to be safe. However, it is advisable to discuss any over the counter vitamins and supplements you are taking with your MS team.
If I have a relapse of my MS, will I still be able to have steroids?
Yes it is generally safe to take steroids while on a DMD. Whether you are prescribed steroids, will depend on the severity of the relapse and the impact it is having on your day to day life. It is important to inform your MS team if you think you are having a relapse, so you can discuss the option of steroids and whether you are on the right DMD for your MS.
Stopping or changing treatment
Is it possible to change which drug I take later on?
You may need to change drugs if you have continued to experience relapses, if your brain scans show that your MS is silently active or if you are experiencing persistent and unmanageable side effects. It is possible to change drugs, although this will be a decision that is made between yourself and your MS team.
What happens if I don't respond to treatment?
If after a period of time you experience the same number of relapses, the severity of relapses is the same or greater than before treatment or your brain scans show that your MS remains silently active, the treatment might not be working for you. Your MS team will discuss your options with you. They may suggest changing (switching) to another DMD, most probably one that is more effective. This is known as escalating treatment.
What happens if my treatment stops working?
You may have been on treatment for a while and your MS has been well controlled and you then notice that things are changing, the treatment may have stopped working for you. You may have more relapses, there may be more changes on your brain scans or you might find that you are having more problems with walking or other symptoms. There are several reasons why this may happen. Sometimes the body’s natural defences will develop antibodies against drugs entering the body, ‘neutralising’ their effect. These neutralising antibodies, will reduce the effectiveness of the drug. If you notice any changes, contact your MS team to discuss your options. They may suggest changing (switching) to another DMD. It might also be that the nature of your MS has changed. Your MS team will review you and your MS and talk through your options with you.
Can I stop treatment?
If you do not feel the treatment is effective or you are struggling with side effects then you can stop the treatment. This should only be done following discussion with your MS team. They may be able to suggest an alternative drug you may wish to try first before stopping treatment altogether.
Is it likely my MS will get worse if I stop treatment?
If you stop treatment there is a greater risk that you will have a relapse. As MS is unpredictable and everyone’s experience is different, it is impossible to predict to what extent your MS may get worse if you stop treatment.
Could my MS team decide to stop my DMDs – if so why?
If your MS team conclude your treatment is no longer working or you develop serious complications from the drug then they may suggest you stop treatment. Even if the drug has been effective in the past, there may come a time when treatment is no longer effective or you are at too high a risk of the complications to continue. Alternatively the nature of your MS may have changed. A proportion of people will develop secondary progressive MS meaning they have fewer or no relapses but have a gradual increase in disability. While you continue to have relapses or show evidence of MS activity on MRI scans, it may be appropriate for you to continue taking one of the DMDs. The progressive phase is thought to be caused by permanent loss of nerves rather than new inflammation, so the DMD drugs are not effective or useful in this stage.
Your team should discuss the reasons why treatment may need to be stopped, give advice on an appropriate time to do this and give support throughout the process.
This page will be reviewed within three years