Last updated: 17 June 2022
This page gives the latest guidance on coronavirus and Covid-19 for people affected by multiple sclerosis.
We will update this page as new information becomes available or advice changes.
Last updated: 17 June 2022
This page gives the latest guidance on coronavirus and Covid-19 for people affected by multiple sclerosis.
We will update this page as new information becomes available or advice changes.
Dates | Changes made |
---|---|
10 Nov 2021 | Updated to reflect changes to self-isolation rules for vaccinated close contacts, to include information on the difference between, and eligibility for, third doses and booster jabs, updated guidance from the ABN around Covid-19 and DMDs, and the approval of an anti-viral medication for the elderly and immunosuppressed which may be taken at home. |
21 Dec 2021 | Updated to divide page in two, separating information on Covid-19 vaccines and boosters into a new page. |
24 Feb 2022 | Updated to include new covid treatments and to amend information on self-isolation. |
7 Apr 2022 | Updated to include a new section on access to Covid-19 treatments and free testing. Removed out-of-date sections. Checked and updated all links to the latest government guidance across all nations. Updated the DMD section to ensure it reflects latest ABN guidance. |
17 Jun 2022 | Updated to reflect new government guidance on highest risk groups who are eligible for Covid-19 antiviral and antibody treatments. |
New treatments are available to people who are at higher risk of serious illness with Covid-19. These antiviral and antibody treatments can help manage your symptoms and reduce your risk of becoming seriously ill.
Find out more what you should do if you catch Covid-19.
NHS information on obtaining treatments for Covid-19
Covid-19 is the disease caused by a new strain of coronavirus first identified in 2019. This particular coronavirus has been named SARS-CoV-2, so you may see this name in some places. Here we will stick to using coronavirus to describe the virus and Covid-19 to describe the disease to try and avoid confusion. As a group, coronaviruses are common across the world. In general, they cause mild respiratory or sometimes gastric symptoms.
The main symptoms of Covid-19 are:
There are several other symptoms linked with Covid-19. Not everyone has all symptoms when infected. If you're concerned about your symptoms, seek medical advice.
Guidance on what you should do if you have symptoms of Covid-19 and if you test positive is changing frequently. You can check the most up-to-date information for each nation here:
If you feel you cannot cope with your symptoms at home, if your condition gets worse, or your symptoms do not get better after 10 days, then use the NHS 111 online coronavirus service. If you don't have internet access, call NHS 111. For a medical emergency you should dial 999.
There is limited data on multiple sclerosis and Covid-19. The UK MS Register has launched a survey to look at how people are dealing with guidance from the government as well as capture data on confirmed or unconfirmed cases of Covid-19 in people with MS. Sign up for the survey.
If you have MS, you have the same risk of developing Covid-19 as anyone else. People with MS are not at a greater risk than the general public of becoming infected with the coronavirus; your immune system is not weakened by MS.
An exception to this is if you're taking certain disease modifying drugs. Some of these drugs suppress parts of your immune system leaving you at a greater risk of infection. For more details about each of the individual disease modifying drugs see the section on disease modifying drugs. If you're concerned, do check with your MS nurse or neurologist. You shouldn't stop any treatment or miss appointments until you've spoken to a health professional.
For most people, including those with MS, Covid-19 is a mild infection. This is supported by preliminary research from Italy which found that people with MS who contracted Covid-19 did no worse than the general population. A study looking at how well people with MS recover from Covid-19 has also provided reassuring results.
For those with a mild infection, treatment will typically be at home and include rest, plenty of fluids and paracetamol or ibuprofen to reduce any temperature. You may be eligible for antibody or antiviral treatments if you catch Covid-19.
More severe infections may require treatment at home or in hospital, which could include antiviral or antibody treatments, support to help you breath, or medicine to reduce inflammation caused by the virus. Treatment aims to relieve symptoms and reduce the effects of the virus while your body fights the infection.
If you have MS and get Covid-19, the way your body deals with the infection (for example a fever) can cause a temporary worsening of MS symptoms. Once you’ve recovered from the infection, your MS symptoms will settle down. A more severe infection could potentially trigger a relapse.
Some people with MS may be at higher risk of more serious illness with Covid-19.
If you're more severely affected by MS, for example you have difficulty with swallowing, clearing your lungs or are prone to chest infections; or if you have other health conditions, including those affecting the heart or lungs – such as high blood pressure or asthma; you might be at greater risk of complications if you develop Covid-19.
Similarly, if you’re on a disease modifying drug that significantly suppresses your immune system, or you’ve recently been treated with steroids, you may be considered higher risk too.
Current evidence suggests that other factors that may increase your risk of serious illness from Covid-19 are: higher disability levels (EDSS greater than 6.0); progressive disease with longer disease duration; older age (above 65); obesity; black, Asian and minority ethnicity (BAME); and if you have other health conditions, particularly diabetes and cardiorespiratory disease.
More information on higher risk groups (previously known as clinically extremely vulnerable) can be found here:
If you catch Covid-19, you may be eligible for a treatment to manage your symptoms and reduce your risk of becoming seriously ill. These are known as antiviral and antibody treatments.
People with MS who are at higher risk of serious illness with Covid-19, despite being vaccinated, are eligible for these treatments. This does not include all people with MS. An independent advisory group report, commissioned by the Department of Health and Social Care, and subsequent government guidance published in June 2022 highlights the following groups at higher risk:
You should have been contacted by the NHS if you’re eligible for the Covid-19 treatments. If you haven’t been contacted, and you think you should have been, it is best to contact your MS team for advice. Your neurologist should be able to confirm if you’re eligible for the treatments and can make sure this is flagged up on your medical records.
Read government guidance on the highest risk groups that are eligible for Covid-19 treatments and how these groups were identified.
There are a range of Covid-19 treatments currently available. Most are antiviral treatments, and one is an antibody treatment.
The antiviral treatments stop the virus multiplying in cells and this stops the virus multiplying in your body. This can help your body overcome the virus infection and may help you get better faster. The antiviral treatments available are:
The antibody treatment is known as a neutralising monoclonal antibody (nMAb). nMAbs are manmade (synthetic) proteins that act like human antibodies in the immune system. They stick to the virus (specifically the spike protein of the virus) and stop it from getting into your lungs and causing an infection.
The antibody treatment is:
Covid-19 treatments need to be given early in order to be effective. You should keep either a rapid lateral flow or PCR testing kit at home so you can quickly do a test if you develop symptoms.
If your test is positive, you should call your GP or NHS 111 as soon as possible. They may have questions for you about your MS or any other conditions that you have, and about any medicines that you currently take. They will organise a referral for treatment if necessary.
If you are offered Covid-19 treatment, it is important to start taking it as soon as you can. Your Covid-19 treatment may be delivered to your home, or a friend or relative may need to collect it for you. Some Covid-19 treatments are given as a drip or infusion into your arm. For this kind of treatment you will need to got to a local hospital or health centre.
If you’re not contacted within 24 hours of your positive test, you should contact your GP, 111 or your MS team. They’ll be able to make an urgent referral for you.
In England and Wales from 1 April, people with MS who are eligible for Covid-19 treatments will continue to have access to free lateral flow tests.
If you live in England, the NHS will contact you directly and send you lateral flow tests to keep at home. If you’ve not received any tests in the post by 11 April, they can be ordered for free from the government website or by calling 119. If you haven’t received any tests, it may be because it’s not flagged up on your medical records that you’re eligible for the Covid-19 treatments. You may therefore want to contact your MS team to check you’re eligible and have your medical records updated.
PCR tests were sent out earlier in the year when the Covid-19 treatments first became available. These are no longer being sent out and should not be used (unless specifically asked to by a health professional).
It’s important that you use lateral flow tests supplied by the government. Tests bought privately (eg, from a pharmacy) can’t be registered on GOV.UK so you’ll not be contacted about Covid-19 treatments if you test positive using one of these.
If you live in Wales, you can order free lateral flow tests from the government website or by calling 119.
Scotland and Northern Ireland are not currently sending out test kits to keep at home. Instead, if you do develop Covid-19 symptoms, you can go on the government website or call 119 to order a PCR test to be sent to your home or book an appointment at a test centre.
In Scotland from 18 April, lateral flow tests will no longer be available for the general public to order and will only be free for some healthcare purposes. From 30 April, PCR testing centres will also close. Guidance on access to tests in Scotland after these dates is due to be updated.
In Northern Ireland from 22 April, free testing will be limited. However lateral flow and PCR tests will continue to be available for people who are eligible for Covid-19 treatments. More information on testing in Northern Ireland.
If you notice Covid-19 symptoms before you get your testing kit, you can call 111 to get a rapid referral. It is best to start the treatment as soon as possible after you test positive.
With the Covid-19 vaccine and booster programmes reaching much of the population, and protecting those most vulnerable, legal restrictions have been lifted across the UK. Generally, people with MS are now advised to follow the same guidance as the general population.
However, as someone with MS, you may feel worried about the easing of restrictions and have questions about what you can do to protect yourself. While cases in the community remain high, you may want to take extra precautions to keep yourself safe. You may wish to:
NHS Volunteer Responders are still available to support people in England who are self-isolating for any reason or are cautious about going out because of coronavirus. They can help with things like collecting shopping, medication, or other essential supplies, and with transport to medical appointments. They can also provide a regular, friendly phone call. They can be contacted on 0808 196 3646 (8am to 8pm, 7 days a week).
In Scotland, the National Assistance helpline is available to support vulnerable people who don't have family to support them and aren't in touch with any support groups in their local community. If you live in Scotland and need help with food shopping, picking up a prescription, emotional support or finding local volunteer groups, call 0800 111 4000 (9am to 5pm).
If you are feeling particularly anxious over the lifting of restrictions, the Every Mind Matters website has some useful information about looking after your mental wellbeing following the Covid-19 outbreak.
The government websites have more advice on staying safe as we learn to live with coronavirus in the long term:
Most disease modifying drugs (DMDs) do not significantly increase your risk of Covid-19 or its complications. The Association of British Neurologists (ABN) has issued guidance on the use of DMDs during the Covid-19 pandemic.
All of the DMDs should be available to people with MS, providing that the benefits of being treated with a DMD outweigh any risks.
There are a range of factors which you and your MS team may need to consider when choosing a DMD during the Covid-19 pandemic to assess your personal risk. This includes:
Although most DMDs have not been seen to increase risk, current evidence suggests that higher disability levels, older age, obesity, male gender, black, Asian and minority ethnicity (BAME), diabetes and cardiorespiratory disease may increase your risk of a severe Covid-19 infection. These factors should be taken into account when assessing your risk and choosing a DMD.
Do not change or stop your medication without first speaking to your MS team.
If you have a hospital appointment for a review or treatment, and you have a cough, high temperature or a loss/change to your sense of smell or taste, you should contact your MS team for advice.
These drugs do not significantly increase your risk of serious Covid-19 infection.
There is some evidence to suggest that, of the highly effective DMDs, Tysabri has the lowest risk of causing a severe infection with Covid-19.
Some MS services are increasing the interval between Tysabri infusions from four to six or eight weeks, in order to keep hospital visits and potential exposure to coronavirus to a minimum. Recent research suggests that increasing the gap between Tysabri infusions reduces the risk of PML, without loss of effectiveness.
Gilenya and Mayzent can increase your risk of viral infections. However, there is currently no evidence that these drugs are associated with an increased risk of severe Covid-19 infection.
Your immune system may not respond as strongly to a Covid-19 vaccine if you’re on Gilenya or Mayzent. Your immune system may not produce as many antibodies as expected so you may get less protection from the vaccine against coronavirus. However, you are encouraged to have the Covid-19 vaccine, and any planned booster jabs, as they’re safe for you to have and you’re likely to gain some protection.
Some evidence suggests that people treated with Ocrevus may be more likely to be hospitalised and need intensive care if they're infected with Covid-19, although the risk appears to be small. Ocrevus may be used cautiously where this risk is balanced by the benefits of the drug and other risk factors have been considered.
Your risk of severe Covid-19 infection may be increased if you have a reduction in immunoglobulin levels. This is where your immune system isn’t making enough antibodies to fight infections (hypogammaglobulinemia).
In times when infection risk is high, your MS team may decide to delay your next Ocrevus infusion or switch to another DMD, particularly if you have other risk factors for severe Covid-19 infection. Research shows that Ocrevus infusions may remain effective for longer than six months.
If you’re on Ocrevus, your immune system may not respond as strongly to a Covid-19 vaccine. Your immune system may not produce as many antibodies as expected so you may get less protection from the vaccine against coronavirus. However, you are encouraged to have the Covid-19 vaccine, and any planned boosters, as they’re safe for you to have and you’re likely to gain some protection. Your MS team will be able to advise you on the optimal time to have the vaccine to achieve the best immune response possible.
Reassuring evidence is emerging with regard to Mavenclad and the risk of severe Covid-19 infection. It can therefore be used if the benefits of treatment and your individual risk has been weighed up.
This DMD can cause a reduced white blood cell count (lymphopenia) for up to three months after each treatment course. You may therefore need to take extra precautions to prevent infection during this time.
Mavenclad may reduce your immune response to a Covid-19 vaccine. Talk to your MS team about the optimal time to have the vaccine to achieve the best immune response possible.
There is a high risk of viral infections in the first month after treatment with Lemtrada. However, research so far has not shown an increased risk of severe Covid-19 infection for people on this drug, although further research is needed to confirm this. Therefore, the benefits of treatment need to be carefully balanced with your individual risk before treatment with Lemtrada is started.
You may need to take extra precautions for at least four weeks after a Lemtrada infusion to prevent infection during this time.
Lemtrada may reduce your immune response to a Covid-19 vaccine. Your MS team will be able to advise you on the optimal time to have the vaccine to achieve the best immune response possible.
AHSCT involves a powerful suppression of the immune system and it carries a very high risk of infection. Until recently, it was advised that it should only be used in exceptional cases. However, now that Covid-19 infection risk is reduced and the majority of the population are now vaccinated, AHSCT is becoming available again.
If you receive AHSCT, you’re most at risk of catching an infection in the 12 months following the procedure. Therefore, it’s highly likely that you’ll need to take additional precautions to prevent infection for this extended period of time. Your transplantation team will advise you on the measures you’ll need to take.
AHSCT may reduce your immune response to a Covid-19 vaccine. Your MS team will be able to advise you on the optimal time to have the vaccine to achieve the best immune response possible.
The ABN has assessed the risks and benefits of monitoring and has recommended a safe minimum schedule for all DMDs during this period. This will keep hospital visits and potential exposure to coronavirus to a minimum. If you notice any new or worsening MS symptoms, you should contact your MS team.
The following revised monitoring schedules are recommended until the risk of Covid-19 infection has reduced:
You can read the full ABN guidance.
A detailed and technical discussion on the Covid-19 pandemic and the use of disease modifying drugs has been published.
You should contact your MS team for advice if you’re on a DMD and you catch Covid-19.
The ABN guidance states that people taking Aubagio, Avonex, Betaferon, Brabio, Copaxone, Extavia, Plegridy, Rebif, Tecfidera, Gilenya or Mayzent do not need to stop treatment if their Covid-19 symptoms are mild. If you’re being treated with Tysabri, Ocrevus, Lemtrada or Mavenclad and you catch Covid-19, future infusions/treatment rounds should be delayed until your symptoms resolve.
If you have a severe Covid-19 infection, it’s likely your MS team will recommend stopping DMD treatment. Gilenya, Mayzent and Tysabri should be restarted within eight weeks if possible to avoid a rebound of MS activity.
Steroids (also known as corticosteroids) may be used to treat relapses in MS. Methylprednisolone is the steroid most often prescribed.
Steroids are not recommended if you have a viral infection as they suppress the immune system which reduces your ability to resist the infection.
If you receive treatment with high-dose steroids, you’re most vulnerable to infection for at least two weeks after the treatment. You may therefore wish to take extra precautions to prevent infection during this time.
You may want to discuss this further with your MS team or GP if you are prescribed steroids while there is significant risk of coronavirus infection.
Medical guidance suggests that it is best to leave two weeks after a vaccination before having steroids, as the steroids may reduce the effectiveness of the vaccination. However, if you have a relapse less than two weeks after your vaccine, you and your MS team may agree that the benefits of taking steroids outweigh the risks.
It is understandable that many of us are worried by the impact that coronavirus is having on the lives of ourselves and our families. Being asked to stay at home and avoid other people has made it feel more difficult than usual to take care of mental health and wellbeing.
Our MS Trust Facebook group has over 11,000 members, and is a great space for people with MS to share experiences, ask questions and chat with others who know what you're going through.
Mind has some great suggestions of ways to help us all cope. These include ways to connect with other people, through phone calls or social media; planing how you are going to spend your time; finding ways to relax and be creative; ways to keep your mind stimulated.
NHS advice on mental wellbeing:
Of course, it's also important to remain as active as possible, so do check out our stick man exercise routines, our Move it for MS exercise videos with Mr Motivator or our neuro-Pilates routines. None of these exercises require special equipment and can easily be done in your living room or back garden!
Around the country, volunteers have formed local groups to support the most vulnerable in their community. Help could involve activities from running errands to the shops, to making phone calls, to providing a friendly voice of reassurance. Covid-19 Mutual Aid has a list of local groups.
There are various sources of support available if you need financial help, or support getting food and other essential supplies, perhaps because you have Covid-19 yourself or you’re trying to avoid busy public places.
For further information on the support available, visit the government websites: