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Coronavirus, Covid-19 and multiple sclerosis

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  1. Last updated: 21 December 2021
  2. What are coronavirus and Covid-19?
  3. What's the risk of catching Covid-19?
  4. Am I more at risk if I catch Covid-19?
  5. What measures should I be taking to protect myself?
  6. I’m considered extremely vulnerable – should I be taking extra precautions?
  7. What can I do to avoid catching Covid-19?
  8. Covid-19 and disease modifying drugs
  9. Covid-19 and impact on MS services
  10. Covid-19 and steroids for MS relapses
  11. Covid-19 and your physical and mental wellbeing
  12. I need help getting food and essential supplies
  13. Find out more

Last updated: 21 December 2021

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.

Everyone in England aged 12 and over can now book a first Covid-19 vaccination.

If you have not yet been called by your GP surgery, you can book your 1st dose at a vaccination hub near you through the NHS website. Those aged 16 and over can also book a 2nd dose using this service. If you're eligible for a booster vaccine, this can also be booked through the NHS website.

Book your covid vaccination here

Our webpage on Covid-19 vaccines and boosters has more information.

What are coronavirus and Covid-19?

Covid-19 is the disease caused by a new strain of coronavirus which was first identified in China. This particular coronavirus has been named SARS-CoV-2, so you may see this name in some places. Here we will stick to using 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:

  • a new, continuous cough – this means you’ve started coughing repeatedly
  • a high temperature – you feel hot to touch on your chest and/or back
  • a loss or change to your sense of smell or taste.

If you develop these symptoms, you should should follow the government advice around self-isolation and arrange to have a test to see if you have Covid-19.

There are several other symptoms linked with Covid-19. However, these symptoms may have another cause and on their own aren't a reason to have a Covid-19 test. If you're concerned about your symptoms, seek medical advice.

If you have symptoms of Covid-19, or have a positive lateral flow test result, you should stay at home and self-isolate immediately and arrange to have a PCR test as soon as possible. This still applies if you've received one or more doses of a Covid-19 vaccine. If you receive a positive PCR test result, you must continue to self-isolate and complete the full isolation period. Your isolation period includes the day your symptoms started (or the day your PCR test was taken if you don't have symptoms), and the next 10 full days. You can return to your normal routine and stop self-isolating after 10 full days if your symptoms have gone, or if the only symptoms you have are a cough or changes to your sense of smell, which can last for several weeks.

If you live in the same household, or are identified as a close contact of someone with Covid-19, you're no longer required to self-isolate if you're fully vaccinated or are aged under 18 years and 6 months. However, you should still self-isolate if these exemptions do not apply to you. If you live in the same household as someone with Covid-19 you are advised to take a PCR test, even if you don't have symptoms, as you're at a higher risk of being infected. If you receive a positive PCR test result you will also need to follow the self-isolation rules.

Further advice from the NHS on self-isolation

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 very 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

What's the risk of catching Covid-19?

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.

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.

Am I more at risk if I catch Covid-19?

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.

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. More severe infections may require treatment in hospital, which could include 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. In November 2021, the first pill to treat mild to moderate Covid-19 was approved in the UK. Molnupiravir (Lageviro) is an anti-viral treatment that works by introducing errors into the genetic code of the virus. This stops it from multiplying, thereby keeping virus levels low and reducing the severity of disease, reducing the risk of hospitalisation and death in those who are at an increased risk of developing severe disease. This includes those over 60years old and the immunosuppressed. Initially, it will only be available to vulnerable patients through a national study. It's thought that this will be done through care homes or prescribed by a GP following a positive test. Molnupiravir can be taken at home, it needs to be prescribed within five days of symptoms developing and is taken twice daily.

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. For this reason, the government included people with multiple sclerosis amongst those considered vulnerable and advised extra care to avoid infection.

If your MS is more severe, or you have other underlying health conditions, you may have a higher risk of developing complications from Covid-19. For example, if you find it difficult to clear your lungs, there’s an increased risk that coronavirus could lead to a more serious chest infection such as pneumonia. If you're at risk of severe disease, you're advised to follow the current advice for the clinically extremely vulnerable.

Anyone who notices symptoms of Covid-19 should follow the self-isolation advice

What measures should I be taking to protect myself?

Many legal restrictions have been lifted across the UK as the Covid-19 vaccine programme has reached the majority of the population. People with MS are advised to follow the same guidance as the general population.

As someone with MS, you may feel worried about the easing of restrictions and have questions about what you can do to protect yourself. Although most restrictions have been lifted, the government is still advising everyone to be cautious while cases remain high. Therefore, you may wish to:

  • minimise social contact with people you don’t live with and increase close contact gradually
  • meet people outdoors where possible or keep fresh air circulating if meeting indoors
  • speak to your employer about the steps they’re taking to reduce the spread of the virus and help keep you safe as workplaces gradually reopen 
  • wear a face covering in crowded public places
  • keep up with personal hygiene, eg regular handwashing
  • do rapid lateral flow tests twice a week and encourage family and friends to test before you meet up.

If you are feeling particularly anxious over the lifting of restrictions, the Every Mind Matters website has some useful coping strategies for coming out of lockdown.

The remaining restrictions in place do vary in each of the different nations so do check what the rules are where you live, or if you're planning to travel between the nations: England, Scotland, Wales and Northern Ireland.

I’m considered extremely vulnerable – should I be taking extra precautions?

During the coronavirus pandemic, a small number of people with MS who were considered clinically extremely vulnerable were advised to follow more restrictive measures called shielding. Shielding involved staying at home as much as possible, limiting contact with people outside your household and keeping visits outside to a minimum.

The people who were advised to shield were:

  • people with more advanced MS who have swallowing and/or breathing difficulties
  • people who are taking certain disease modifying drugs which suppress your immune system and significantly increase your risk of infection.

Across the UK, extremely vulnerable people are no longer being advised to shield. Instead, people are being advised to follow the same guidance as the general population, whilst considering taking some additional precautions to reduce the risk of being exposed to Covid-19. Therefore, you may choose to:

  • limit close contact with people you don’t live with, particularly when cases are high in your area
  • if you’re comfortable meeting other people, meet them outside
  • if meeting someone inside, allow fresh air in to help remove any infectious particles that might be lingering in the room. You might choose to keep windows open a small amount continuously or to open them more fully for short, sharp burst of 10-15 minutes regularly throughout the day
  • wash your hands regularly and avoid touching your face
  • continue social distancing, if that feels right for you
  • ask family and friends to take a rapid lateral flow test before they meet you
  • wear a face covering in enclosed or crowded places
  • visit shops at quieter times of the day
  • discuss with your employer the possibility of continuing to work from home.

Guidance on protecting extremely vulnerable people varies between the different nations. Read the guidance for England, Wales, Scotland and Northern Ireland.

All people with MS can now access treatment for Covid-19 that will reduce your risk of becoming severely ill. You can read more about this in our page on Covid-19 treatments for people with MS. 

What can I do to avoid catching Covid-19?

Everyone should do what they can to reduce the spread of coronavirus. Even if you have no symptoms, you could be spreading the virus to other people. You can reduce your risk of catching coronavirus by stringently following the relevant government guidelines for your own particular situation. This means:

Limiting contact with other people

  • avoid contact with people who have symptoms of coronavirus
  • walk or cycle rather than using public transport
  • if you need to use public transport, avoid peak times
  • work from home, if you can. Your employer should support you to do this
  • avoid social activities, events or gatherings of large groups of people
  • use phone, online services, or apps to contact your GP surgery or other NHS services
  • keep at least two metres away from other people if you do go out
  • wash your clothes regularly
  • keep indoor areas well ventilated.

Taking extra care over hygiene

  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin immediately and wash your hands afterwards
  • do not touch your eyes, nose or mouth if your hands are not clean.

Protecting others by wearing a face covering

A face covering is a piece of material that covers the nose and mouth. It can be a scarf, home-made mask or commercially bought mask. Face coverings are worn to protect other people from infection rather than protecting the wearer. Most people with MS will be able to wear a face covering safely.

Rules on when you need to wear a face covering vary across the UK. Individual businesses may also have their own requirements. Read the current rules on face coverings in England, Scotland, Wales and Northern Ireland.

Covid-19 and disease modifying drugs

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 for people with MS who are taking or about to start one of the DMDs.

The guidance considers that all DMDs should now be available to people with MS during the pandemic. However, at an individual level, the potential benefits of any treatment should outweigh the risks. There is a range of factors which you and your MS team may need to consider to assess your personal risk. This includes:  

  • the rate of Covid-19 infection where you live
  • your health in general
  • your likelihood of being exposed to Covid-19 (eg. through your job or caring responsibilities)
  • the impact a DMD may have on your risk of serious Covid-19 infection and the efficacy of a vaccine.

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 not go to the hospital, instead contact your MS team for advice.  

Aubagio, Avonex, Betaferon, Brabio, Copaxone, Extavia, Plegridy, Rebif, Tecfidera

These DMDs may be used even when there are high rates of Covid-19 in the community. These drugs do not increase your risk of serious Covid-19 infection. 

Tysabri

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

Gilenya may be used, however this treatment does increase your risk of viral infections. If you're concerned about this risk, you should discuss this further with your MS team.

Ocrevus

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. Ocrevus may be used cautiously in people with active relapsing remitting MS (RRMS) 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 is likely to be increased for many months after treatment with Ocrevus. People on Ocrevus should therefore take extra precautions to prevent infection. 

If you are due to have further treatments with Ocrevus, you and your MS team may consider delaying treatment for a few months until the risk of coronavirus infection is reduced. Research shows that Ocrevus infusions may remain effective for longer than six months.  

The benefit of using Ocrevus to treat primary progressive MS may be outweighed by the increased risk of Covid-19. This is because people with PPMS are likely to have more risk factors which may increase their risk of severe Covid-19 infection.  

If any vaccine for Covid-19 is developed which is a live vaccine, it may not be safe for people on Ocrevus to be given this vaccine. You may want to discuss this further with your MS team if you’re considering starting Ocrevus. All vaccines which have been approved to date are not live vaccines.

Mavenclad

The evidence to date to assess the risk of severe Covid-19 infection when taking Mavenclad is reassuring. It may be used where there has been an appropriate individual risk and benefit discussion. 

Your risk of severe Covid-19 infection is likely to be increased for months after treatment with Mavenclad. Therefore, if you’re taking this medication, you should take extra precautions to prevent infection.

If you are in the middle of a treatment course for Mavenclad and are concerned about continuing with this course, you should discuss this further with your MS team.  

Lemtrada

Studies so far haven't shown an increased risk of severe Covid-19 infection with Lemtrada. However, this data is incomplete and it's known there's a high risk of other viral infections in the first month after treatment. So, a balanced discussion of the benefits of the drug whilst considering any personal risk factors should take place before it's prescribed.  

People who are treated with Lemtrada are typically recommended to shield for at least four weeks after the infusion.  

If you are due a second course of Lemtrada, you may want to consider delaying this. However, this risks the potential return of disease activity. A further assessment should take place with the aim of administering the infusion as soon as possible whilst having suitable strategies in place to reduce the risk of infection.

Stem cell transplant – AHSCT

As AHSCT involves a powerful suppression of the immune system, it carries a very high risk of infection. Until recently, it's use was paused with only exceptional cases considered for treatment. As the overall risk of infection with Covid-19 has reduced and there has been widespread vaccination, AHSCT is now available again. A discussion should take place with both the stem cell transplantation team and the regional multidisciplinary team (MDT) to determine the risks and benefits to the individual.

If you receive AHSCT, you're likely to be most at risk of contracting infections for up to 12 months after the procedure and are highly likely to need to take precautions as advised by the transplant team, and depending on Covid-19 levels at the time.

Disease modifying drug monitoring

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:

Avonex, Betaferon, Extavia, Plegridy, Rebif – three months after starting then none required

Copaxone, Brabio – none required

Aubagio – monthly for first six months, then every four months if stable

Tecfidera – every six months if stable and lymphocyte count above 0.5

Gilenya – every six months in first year then every 12 months if stable

Tysabri – every six months JC virus test

Ocrevus – before starting treatment

Lemtrada – every three months

Mavenclad – test at two months; delay six month test if two months stable and lymphocyte count above 0.5

You can read the full ABN guidance here.

A detailed and technical discussion on the Covid-19 pandemic and the use of disease modifying drugs has been published.

What if I catch Covid-19 while I’m on a DMD? 

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 or Gilenya 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 and Tysabri should be restarted within eight weeks if possible to avoid a rebound of MS activity. 

Covid-19 and impact on MS services

NHS services are very stretched, some nurses and doctors have developed symptoms of Covid-19 and are self-isolating, many others were taken away from MS services to work in A&E, intensive care or on hospital wards and so there is a backlog in services.

MS teams are trying their best to keep their service running during this crisis. If you are unable to contact your MS team, you can contact your GP or NHS 111 for advice.

If you have an appointment at your hospital, check the hospital website for current arrangements. Many routine outpatient appointments have been cancelled, although where possible your appointment will be rearranged as a telephone or video appointment. If there are changes to your appointment, you should be informed by the hospital.

If your questions concern coronavirus, this webpage is updated regularly, so do check here first and let us know if there are additional topics you would like to see covered on this page.

Our Information Team may be able to help so do email your questions to ask@mstrust.org.uk

Covid-19 and steroids for MS relapses

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.

Treatment with steroids is likely to increase your risk of a more severe infection with Covid-19. Guidance from the ABN therefore recommends shielding for at least two weeks after treatment to reduce your risk of catching the virus.

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. 

Covid-19 and your physical and mental wellbeing

Mental wellbeing

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.

Helena from the MS Trust's Information Team takes a look at ways to look after your own mental wellbeing during these strange and scary times.

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:

Government guidance on supporting children's mental health and wellbeing.

Physical 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!

Local support groups

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.

I need help getting food and essential supplies

There are various sources of support available if you need support getting food and other essential supplies.

  • Local authority – Your local authority may be able to provide support to vulnerable people and those who are self-isolating.
  • Covid 19 Mutual Aid UK – There are mutual aid groups all over the UK that are providing support to vulnerable people in the community. The groups are run by volunteers who can help you with running errands, food shopping and emotional support. Search for your local group 
  • Local businesses – Increasingly, small local businesses, like farm shops, cafes, pubs and restaurants, have adapted their services and are supporting people in the community by offering food deliveries in their local area. It's worth investigating what's being offered by local businesses where you live. Have a look on their website or social media pages, or alternatively give them a call.
  • National Assistant Helpline (Scotland) – The Scottish government has launched a helpline for 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).

Find out more

The NHS website has further advice on COVID-19, which covers the risk of catching it, simple ways to avoid catching or spreading it, and what to do if you are worried you might have caught it.

Government guidance for working safely during coronavirus.

Government guidance for people who are considered clinically extremely vulnerable

Foreign Office advice on travel to affected regions

Association of British Neurologists guidance on disease modifying drugs

How to stay calm and carry on during the coronavirus crisis when you have MS – a blog by Helena from the MS Trust

Coronavirus and MS podcast – from the MS Trust

Patient Information Leaflet from the Scottish Government on how the coronavirus might affect people with neurological conditions

The Neurology Academy has been running a series of webinars since late March 2020 examining the impact of Covid-19 on people with MS and discussing how care and management of people with MS needs to change at this time. You can view the webinars by clicking on this link (opens in an external window). You can view all the webinars which have run to date and also register for upcoming webinars which are listed on the same page.

References

  • Willis MD, et al. Multiple sclerosis and the risk of infection: considerations in the threat of the novel coronavirus, COVID-19/SARS-CoV-2. Journal of Neurology 2020;267(5):1567-1569. Full text
  • Hughes R, et al. COVID-19 in persons with multiple sclerosis treated with ocrelizumab - A pharmacovigilance case series. Multiple Sclerosis and Related Disorders 2020;42:102192. Full text
  • Maghzi AH, et al. COVID-19 in teriflunomide-treated patients with multiple sclerosis. Journal of Neurology 2020;267(10):2790-2796. Full text
  • Louapre C, et al. Clinical Characteristics and Outcomes in Patients With Coronavirus Disease 2019 and Multiple Sclerosis. JAMA Neurology 2020;77(9):1079–1088. Full text
  • Korsukewitz C, et al. Neurological immunotherapy in the era of COVID-19 - looking for consensus in the literature. Nature Reviews Neurology 2020;16(9):493-505. Full text
  • Loonstra FC, et al. COVID-19 in multiple sclerosis: The Dutch experience. Multiple Sclerosis Journal 2020;26(10):1256-1260. Full text

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