Coronavirus and myositis

This page pulls together some useful resources, websites and FAQs about coronavirus (Covid-19) and myositis.

This information page on coronavirus and myositis pulls together some useful resources, websites and FAQs which you may find helpful.

We aim to update this page regularly so do bookmark it. Last updated 5/12/2021.

Key websites

For the latest and most up-to-date information about the situation in the UK, we recommend you visit these main sources of information:

England

Northern Ireland

Wales

Scotland

You may also find this clinical guide for the management of rheumatology patients during the coronavirus pandemic helpful, as well as this information on Versus Arthritis website.

Coronavirus webinar resources

Dr James Lilleker and Professor Hector Chinoy very kindly hosted webinars for Myositis UK members on the topic of living with myositis and coronavirus (25 March and 8 April 2020). 

We are very grateful for their time and know our members hugely appreciated these sessions. 

These webinars have also helped inform the frequently asked questions below.

Here are the links to the presentations and resources shared in the sessions:

Webinar 25/03/2020

Webinar 8/04/2020

Coronavirus and myositis FAQs

Am I considered higher risk because I have myositis?

Coronavirus can make anyone seriously ill, but there are some people who are at a higher risk.

People living with myositis may be considered higher risk if you:

  • Are on prednisolone (steroids) at a dose of >/= 20mg daily for more than 4 weeks
  • Are on a combination of steroids and immunosuppressive drugs
  • Are taking more than one immunosuppressant with another illness that puts you at risk
  • Have respiratory muscle weakness
  • Have interstitial lung disease
  • Have problems swallowing

‘Clinically extremely vulnerable’ is the most commonly used term being used to describe people whose health condition means they may be more at risk of severe Covid-19 illness.

You may find the following tools to help identify your level of risk and if you are classed as clinically extremely vulnerable:

If you’re at higher risk from coronavirus, you would have received a letter from the NHS.

What should I do if I am higher risk?

The vaccine roll-out has helped reduce the risk of catching coronavirus. However, clinically extremely vulnerable people should continue to take care over the winter period where cases are expected to rise.

As well as following the restrictions and social distancing rules that are in place for everyone (some variations between nations), you can also check the number of Covid-19 cases in your area on the gov.uk website to help with your day-to-day decision making.

Here are some things you can do to help keep yourself safe:

  • try to stay at least 2 metres (3 steps) away from anyone you do not live with (or anyone not in your support bubble)
  • wash your hands with soap and water often – do this for at least 20 seconds
  • use hand sanitiser gel if soap and water are not available
  • wash your hands as soon as you get home
  • wear something that covers your nose and mouth in places where it’s hard to stay away from other people, such as on public transport, in shops and in hospitals

See this helpful NHS webpage for further info.

What support can I get?

You can contact your local authority if you need urgent help getting essential supplies and cannot rely on supermarket deliveries, family, friends or neighbours.

See what benefits you might be entitled to via the Citizen’s Advice website.

You may be able to eligible for the Coronavirus Job Retention Scheme

In Scotland, the national helpline also remains open. There is also a vaccination helpline if you need help getting to appointments. See this webpage for more details.

Should I stop my medication?

No. If you’re on medication for myositis do not stop taking it suddenly.

While you may be concerned about your risk of catching coronavirus and becoming unwell, stopping your medication could make your myositis worse and cause more harm.

This is especially true if you are on steroids. If you stop taking steroids suddenly it can make you very unwell.

Try to make sure you have a good supply of your medications at home, three-months worth if possible as this situation could go on for some time.

Ask family, friends or neighbours to bring your medication to you, or have these delivered.

Should I change my medication dose?

You could speak to your specialist or GP to make sure you are on the lowest dose of medication possible.

Hopefully this should be the case anyway but if you are on a process of tapering medication, there may be instances where this could be done more quickly.

I’ve got a hospital appointment, should I go?

If you have hospital appointments scheduled you will need to make an individual assessment on whether you should attend or not.

Some appointments could easily be postponed. Others, such as scheduled biologics (eg, rituximab) may be necessary to help keep you well.

If you are on immunosuppression, you will likely have regular blood monitoring appointments. These are important but there could be some flexibility to do these less frequently if you’ve been stable on a drug for a long time.

What exercises can I do in my home to help stay healthy?

Will Gregory, consultant physiotherapist working for the Rheumatology Team at Salford Royal, has been working on a home exercise programme for people with myositis which you may find useful during this period of lockdown.

The document is in a draft format for the time being and Will would welcome feedback. You can feedback by downloading this form and returning it to Will at William.Gregory@srft.nhs.uk

The exercise document contains two separate exercise programmes. The first is from an internationally renowned research team in Sweden and is good to work on for diagnoses of dermatomyositis, polymyositis, anti-synthesase syndrome, IIM, overlap diagnoses and necrotising myopathy.

The second programme is specifically for diagnoses of inclusion body myositis (IBM) and has been recommended by research in Australia and ratified by the team in Sweden.

While other exercise programmes may be out there, these are the best evidence-based for people with myositis.

What can I do to look after my mental wellbeing?

There’s lots of great resources out there to help you look after your mental wellbeing.

Public Health England has published this guide with advice on how to look after your mental health and wellbeing during the coronavirus crisis.

The Chartered Society of Physiotherapy (CSP) have also compiled these resources to support you with managing your physical and mental health and wellbeing.

If you’re experiencing difficulties and looking for emotional support, reach out to organisations like Mind and the Samaritans

What happens if I get symptoms of coronavirus?

If you develop symptoms of Covid-19 (high temperature above 37.8 °C and/or new and continuous cough) seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access. 

If you do develop symptoms and become unwell, the general advice for those taking immunosuppression is to stop medication. You can restart when you have recovered.

However, it is vital that those tasking steroids do not stop as stopping steroids suddenly can make you very unwell.

 

What should I know about the vaccines? 

Three Covid-19 vaccines have been approved for use in the UK. This includes the Pfizer/BioNTech vaccine, the Oxford AstraZeneca vaccine, and the Moderna vaccine.

As these are not live vaccines, they are safe for people who are on medicines that suppress the immune system.

If you receive rituximab infusions, you can still have the vaccine but should pay attention to when (rituximab blocks the body from making antibodies so it may may reduce the effectiveness of vaccines). If you’ve already had rituximab it’s safe to have the vaccine when you’re offered it. If you’re offered the vaccine close to an infusion of rituximab, ask your clinical team if you can delay the infusion by a few weeks, if it’s safe to do so.

If you have any concerns or questions about the vaccine in relation to your treatment, we recommend contacting your consultant in advance so you have the information ready before you are invited for a vaccine.

How do I get my vaccinations?

The Joint Committee on Vaccination and Immunisation (JCVI) advised that frontline health and social care workers and those at increased risk of Covid-19 be in the priority groups for vaccination. If you’re in the priority groups, you should already have had your first and second vaccines.

In September 2021, the JCVI announced that people who had severely suppressed immune systems should be offered a third vaccine. This is not the booster dose, but an additional vaccine. Those who receive a third vaccine can have their booster 3 months later.

Everyone else will be invited to have a booster dose 6 months after their second vaccine. In November 2021, the government announced this would be reduced to 3 months. The NHS should be accommodating this soon.

For the most up to date information about vaccines and who can have them, please visit the following websites:

England: book an appointment using the national booking system or call 119 between 7am and 11pm.

Scotland: contact your GP or book your appointment online.

Wales: find your local NHS health board.

Northern Ireland: book your appointment online.

How at risk are children and young people with juvenile dermatomyositis? Should they get the vaccine?

Available evidence still suggests that children and young people with rheumatological/ophthalmic conditions are at no greater risk from Covid-19 than other children and young people without these conditions.

However, some children and young people aged 12-15 who have rheumatological/ophthalmic conditions will now be eligible to receive the vaccine. The vaccine offered will be the Pfizer/BioNTech vaccine.

Having the vaccine will be a matter of personal choice for each family, but if your child/young person is offered the vaccine, they are recommended to have it.

Read a detailed statement about this on CCAA’s website

Stay safe, stay well

We hope that all our members are keeping safe and well, wherever you are. We know how difficult it can be living with myositis at the best of times. We encourage you to stay positive and keep in touch with the myositis community through Facebook and the community zone.

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