The following article has been updated to reflect the latest guidance. The situation is likely to change further over the coming weeks. Please check back here regularly for the latest updates.
If you are in crisis, please contact LUPUS UK by calling 01708 731251 (Monday to Friday – 9am to 5pm) or email firstname.lastname@example.org. Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.
Currently there is little known about the virus in lupus. Also, people with lupus often have very different symptoms from each other and we cannot give any more specific details on a case-by-case basis at this time. We appreciate that some guidance may therefore be very general.
What is coronavirus (COVID-19)?
A coronavirus is a type of virus. As a group, coronaviruses are common across the world, with some causing the common cold. Typical symptoms of coronavirus include fever and a cough that may progress to a severe pneumonia causing shortness of breath and breathing difficulties.
Novel coronavirus (COVID-19) is a new strain of coronavirus.
All viruses mutate. These tiny genetic changes happen as the virus makes new copies of itself to spread and thrive. Most are inconsequential, and a few can even be harmful to the virus’ survival, but some can make it more infectious or threatening. There are now many thousands of different versions, or variants, of the COVID-19 virus circulating. Experts’ concerns focus on a small number of these.
At this time, there isn’t any evidence to indicate that any common variant strains are associated with more severe disease from infection. There is also no sufficient evidence to suggest that the COVID-19 vaccines being administered in the UK will be infective against existing common variant strains.
How is it spread?
The virus spreads mainly between people who are in close contact with one another (within about 6 feet or 2 metres) through water droplets produced when an infected person coughs or sneezes. These droplets can land in the eyes, mouths or noses of people who are nearby or possibly be breathed into the lungs.
A person can get the coronavirus (COVID-19) by touching a surface or object that has the virus on it and then touching their own mouth, nose, or eyes, but this is not thought to be the main way the virus spreads.
What are the signs and symptoms of coronavirus?
Symptoms of COVID-19 may develop days after the infection starts and evidence suggests someone who feels well can spread the virus during this time. If you think you have had contact with someone who is infected or you are notified by the NHS ‘Test and Trace’ service then it is important that you self-isolate. People who have been in close contact with someone who has had a positive test must stay at home for 14 days, even if they do not have symptoms, to stop unknowingly spreading the virus.
The main symptoms of coronavirus are:
- High temperature
this means you feel hot to touch on your chest or back (you do not need to measure your temperature).
- New, continuous cough
this means coughing a lot for more than an hour, or three or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual).
- Loss or change to your sense of smell or taste
this means you’ve noticed you cannot smell or taste anything, or things smell or taste different to normal
Most people with coronavirus have at least one of these symptoms.
In more severe cases COVID-19 can cause problems such as shortness of breath and pneumonia. Severe COVID-19 is much more likely if you are older or have any of the health conditions that make you vulnerable.
Am I at risk because of my lupus?
Coronavirus (COVID-19) is a relatively new disease so there is limited information about risk factors for severe infection. Based on current information, older adults and people of any age who have certain underlying medical conditions are at higher risk for severe infection from the virus.
Systemic lupus erythematosus (SLE or lupus) is a disease which can vary a lot in how it presents and the types of treatment needed. As such, some people with lupus are likely to be more vulnerable to the virus than others. However, as the virus is still relatively new there is currently little information on the effects of the infection in people with lupus, although we are beginning to learn more.
In a press release published by the European Congress of Rheumatology (EULAR 2020), immunosuppressant and biologic treatments were not associated with hospitalisation due to COVID-19, whilst daily treatment of 10mg or more of prednisolone did present an increased risk . Whilst these are early findings based on a limited number of cases, it suggests that some immune-suppressant treatments may not increase risk of severe COVID-19 symptoms as much as previously feared. Please note, as these are early findings they have not resulted in a change to guidance and you should continue to follow precautionary advice you have been given.
The British Society for Rheumatology (BSR) produced a risk stratification guide to help doctors and nurses divide people with lupus into groups with different levels of risk. The risk level is split into three groups
1) High Risk (also referred to as ‘Clinically Extremely Vulnerable’):
You would be considered as highest risk if;
- Your treatment includes steroids (prednisolone typically >20mg daily or less in combination with other drugs)
- Your treatment includes cyclophosphamide in the last six months
- Your treatment includes a combination of multiple immunosuppressive* drugs and biologic** medications and you also have another risk factor such as heart disease, lung disease, kidney disease, diabetes or are aged over 70 years.
- Your disease is poorly controlled and/or you’ve had a recent flare.
- You’re on dialysis or have chronic kidney disease (stage 5).
2) Moderate Risk (also referred to as ‘increased risk’, ‘at risk’ or ‘vulnerable’):
You would be considered at increased risk if;
- Your disease is well-controlled with a single biologic** or immunosuppressive* therapy but you are not on steroids and you are under 70 years of age and do not have any additional health problems.
- Your disease is well controlled with only hydroxychloroquine but you also have another risk factor such as heart disease, lung disease, kidney disease, diabetes or are aged over 70 years.
3) Normal Risk:
You would be considered at normal risk if;
- Your disease is well controlled and you are on no long-term medication, except from hydroxychloroquine.
- You are under 70 years of age and you do not have any additional health problems.
* Immunosuppressive medications include: Azathioprine, Leflunomide, Methotrexate, Mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, Tacrolimus, Sirolimus. It does NOT include hydroxychloroquine or sulphasalazine, either alone or in combination.
** Biologic/monocolonal includes: Rituximab within last 12 months; all anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab and biosimilar variants of all of these); Tociluzimab; Abatacept; Belimumab; Anakinra; Seukinumab; Ixekizumab; Ustekinumab; Sarilumumab; Canakinumab
The Rheumatology Department at Chapel Allerton Hospital in Leeds have created a flowchart to help patients understand which risk group they belong to. They have also created a video (HERE) to talk you through the flowchart and explain the precautionary measures you need to take.
Due to the complexity of lupus and the range of treatment options, not all individuals will necessarily fall neatly into one of these risk categories. In these circumstances the patient’s consultant will need to carefully consider which risk group is most appropriate.
What if I stopped immunosuppressant treatment within the past six months?
It is important not to stop your medication without talking to your doctor or nurse specialist. In some cases, your doctor or nurse may have told you to stop your medication in the past because it was no longer needed.
With the exception of rituximab, which stays in the body for a long time, it is difficult to provide specific advice to anyone who has stopped an immunosuppressant treatment in the past six months. If you have been advised to stop an immunosuppressant therapy in the past six months and haven’t received guidance from your medical team then you may wish to contact them as your risk would need to be considered on a case-by-case basis.
What about people with discoid lupus, sub-acute cutaneous lupus, mixed connective tissue disease (MCTD) or undifferentiated connective tissue disease (UCTD)?
If you do not have a diagnosis of SLE you could check whether you meet any of the other criteria above. If you would not usually be invited for an annual flu vaccine, are not on immunosuppressive treatment and do not have a history of lung symptoms then you may be in the ‘normal risk’ group and advised to follow normal social distancing measures. If you are uncertain we encourage you to check with your medical team.
What about children with lupus and/or associated conditions?
On the 6th July 2020 the Government announced that the majority of children considered “clinically extremely vulnerable” to COVID-19 will be able to be removed from the shielded patient list. This change to guidance came following evidence from paediatric clinicians showing that COVID-19 poses a low risk to most children and young people.
Children should only be removed from the shielded patient list by their GP or specialist doctor following consultation with the child and their family. Specialists and GPs were asked to contact children and their families to discuss this over the summer.
The latest guidance for families is in line with the recommendations from the RCPCH and is as follows:
- a small group of children who receive specialist care in hospitals may need to carry on shielding following a consultation with their doctor. This includes those receiving cancer care or those at risk of severe infection due to an immunodeficiency.
- most other children who were initially identified as being clinically extremely vulnerable will no longer be considered at highest risk. In particular, children and young people who are cared for just by their GP are very unlikely to need to continue to shield in the long term.
You can see the full guidance HERE.
If your child has lupus and you have not been contacted by their GP or specialist to discuss shielding, you may wish to contact them.
What precautionary measures should I be taking?
England, Wales, Scotland and Northern Ireland each have a different approach to controlling the spread of the virus and therefore have different rules and guidelines. Here we will outline the guidance for the three risk levels for each of the nations.
Links to official guidance:
National Guidance & Clinically Extremely Vulnerable Guidance
National Guidance & Clinically Extremely Vulnerable Guidance
National Guidance & Clinically Extremely Vulnerable Guidance
National Guidance & Clinically Extremely Vulnerable Guidance
On 4th January 2021 a new national lockdown was introduced, instructing people to ‘Stay At Home‘. People who are in the High Risk (“Clinically Extremely Vulnerable”) group are advised to follow the shielding guidance and only leave home for exercise and to attend medical appointments. This means that you should not attend your workplace. The new measures are expected to be in place until at least mid-February.
On 22nd December 2020 new written guidance was issued to people in the High Risk (“Clinically Extremely Vulnerable”) group. The new guidance advises people within this group “that they should no longer attend work or school outside the home“. It is still recommended to leave the home for exercise and to attend medical appointments. You can read the latest written guidance HERE. The national measures in Wales are reviewed every three weeks.
On 5th January 2021 a temporary national lockdown was introduced for mainland Scotland. Island communities remain in level 3 with strict restrictions on who can travel to and from them. The Chief Medical Officer wrote to everyone on the shielding list during the week beginning 4th January 2021 to set out the advice. People in the High Risk (“Extremely Clinically Vulnerable”) group are advised not to attend their workplace and to only go outside for exercise or to attend medical appointments.
From 26th December 2020, people who are in the High Risk (“Clinically Extremely Vulnerable”) group are advised not to attend their workplace. The Chief Medical Officer will write this group of people to advise of this change. This is not a return to shielding as it was previously. You are not being advised to stay permanently indoors, and are encouraged to continue to go outside for exercise and attending medical appointments.
The guidance issued by each nation is advisory and therefore you are recommended to take the measures you are able to, that allow you to feel secure.
The latest guidance being issued to people in the High Risk (“Clinically Extremely Vulnerable”) group is less restrictive than the shielding advice from the first wave of the pandemic. If you live in an area where shielding guidance is active, you are strongly advised to follow these precautionary measures to help keep yourself safe.
You should stay at home as much as possible but are encouraged to go outdoors for exercising and attending health appointments.
Even if you have had both doses of the COVID-19 vaccine, you should continue to follow this shielding advice, until further notice as we continue to assess the impact of vaccination among all groups.
You are advised to stay at home as much as possible. You may wish to meet up with one other person from outside your household or support bubble to exercise outdoors, for example in an outdoor public place, but we suggest that you always try to do so as safely as possible.
Try to keep all contact with others to a minimum and avoid busy areas. Whenever you go outdoors continue to maintain strict social distancing, wash your hands regularly and avoid touching your face.
You should also try to stay 2 metres away from other people within your household if they are not shielding with you, especially if they display symptoms of the virus or have been advised to self-isolate.
You are strongly advised to work from home. If you cannot work from home, then you should not attend work. The UK Government has restarted the Coronavirus Job Retention (furlough) Scheme and you should be eligible if you are advised to shield. Any official email/letter advising you to shield will be a formal notification and can act as evidence for your employer to show that you cannot work outside your home.
If it is possible, other people in your household should try to work from home to reduce the risk of bringing the virus in with them. However, the official guidance states that they can still attend work if they cannot work from home and therefore any adjustments are at their employer’s discretion.
More evidence has emerged that shows there is a very low risk of children becoming very unwell from COVID-19, even for children with existing health conditions. Most children originally identified as clinically extremely vulnerable no longer need to follow shielding advice. Speak to your GP or specialist clinician if you have not already done so, to understand whether your child should still be classed as clinically extremely vulnerable.
Those children whose doctors have confirmed they are still clinically extremely vulnerable are advised not to attend school. The school will make appropriate arrangements for the child/young person to be able to continue their education at home.
The official guidance advises that children who live with someone who is clinically extremely vulnerable, but who are not clinically extremely vulnerable themselves, should still attend school when they are open.
If you have concerns about your child attending school or college, you should discuss with their school or college the measures they are putting in place to reduce risks in line with government guidance. Where children are not able to attend school as parents are following clinical and/or public health advice, the absence should not be penalised.
You should avoid all non-essential travel by private or public transport, this includes not travelling to work, school or the shops. You should still travel to face-to-face hospital and GP appointments unless told otherwise by your doctor. If you need help to travel to an appointment, you can speak to your health care professional to arrange transport support. They can arrange this with NHS Volunteer Responders.
You are advised not to go to the shops. Use online shopping if you can or ask others to collect and deliver shopping for you (friends, family, or a volunteer, including NHS Volunteer Responders). If you already have a priority delivery slot with a supermarket that will continue, you do not need to do anything further.
If you cannot access food, your local council can offer support. This may include helping you to request a priority supermarket delivery slot (if you do not already have one) or help with shopping. Find your local council HERE.
You are advised not to go to a pharmacy. You are encouraged in the first instance to ask a friend, family member, carer or a volunteer (for example one of the NHS Volunteer Responders) to collect your medicines for you. If none of these are available, then you will be eligible for free medicines delivery. Please contact your pharmacy to inform them that you are clinically extremely vulnerable and need your medicines delivered, and they will arrange this free of charge.
Register for additional support
A new online service at https://www.gov.uk/coronavirus-shielding-support is now live for you register for support.
You will be able to:
- request access to a priority supermarket delivery slot (if you have already got priority supermarket deliveries, you will keep them).
- tell your council if you need support that you are unable to arrange yourself and cannot be provided by friends, family or other support networks.
- make sure your details such as your address are up to date.
More information about available support, including the NHS Volunteer Responders Programme can be found on our regularly updated page, HERE.
‘Strict’ Social Distancing
Unlike people in the High Risk (“Clinically Extremely Vulnerable”) group, people in this group were not advised to shield themselves. However, people in the moderate risk group do still have an increased risk of serious illness from COVID-19. Therefore, even though you’re still able to leave your home in line with local/national rules, you should try to do this as infrequently as possible, and take all possible precautions.
How to follow strict social distancing rules
People in the ‘moderate risk/vulnerable’ group are advised to practice stricter social distancing rules than the rest of the population.
- If you cannot work from home, you may be asked to attend your workplace (as long as it is COVID-secure).
- You may wish to signal to other people that you are concerned about maintaining social distancing. The government has made optional badges that can be used to signal to others that they need to pay attention and give you space. You can download and print these HERE. You can also purchase Hidden Disability Sunflower Lanyards that say ‘I have lupus’ from the LUPUS UK shop HERE.
- You may prefer to ask family, friends or local support services to continue to collect your shopping and/or medications.
- If you do choose to go to the supermarket, you may wish to visit during their priority time slots for the elderly and most vulnerable.
Information about available support can be found on our regularly updated page, HERE.
‘Normal’ Social Distancing
Some people who have lupus with no overlapping diagnoses or other health problems, well-managed disease with no recent flares and treatment with only hydroxychloroquine may be considered to be in the normal risk group and recommended to follow standard social distancing measures (you can find the official guidance HERE). It is important to remember that this advice is not specific for lupus however and this interpretation is based on current knowledge.
What about hydroxychloroquine?
Unlike immunosuppressants, hydroxychloroquine is known as an immunomodulatory drug and is unlikely to limit your body’s response to infection.
There has been interest in this medication as a possible treatment for the coronavirus (COVID-19). On 5th June 2020, the Chief Investigators of the Randomised Evaluation of COVid-19 thERapY (RECOVERY) Trial on hydroxychloroquine published a statement. They concluded from the trial that there is“no beneficial effect of hydroxychloroquine in patients hospitalised with COVID-19”.
Patients with lupus who are already prescribed hydroxychloroquine should continue taking it. Those who are not on hydroxychloroquine will only be advised to take it by their doctor if it is needed for treatment for their lupus. You can read more about this HERE.
You can read more about lupus, hydroxychloroquine and COVID-19 in our article HERE.
Why isn’t lupus specifically named on the list of conditions in the Government guidance?
The lists published by the government and NHS of people with an increased risk of severe illness from coronavirus are available HERE. The lists now state that they “may not include everyone who’s at higher risk from coronavirus and may change as we learn more about the virus.”
Should I have the COVID-19 vaccine?
The NHS has started the COVID-19 vaccination programme, inviting the people who are most at risk from coronavirus to have their first dose of the vaccine. It is generally recommended that people with lupus should have the vaccine.
We have created a separate article about COVID-19 vaccination which will be updated regularly as more information and guidance becomes available.
Should I stop taking my lupus medication(s)?
It is advised that you DO NOT make any changes to your prescribed lupus medications in an attempt to reduce your risk of contracting the virus. It is important to remember that if your lupus becomes active then this may also increase your risk of picking up infection. If you are concerned that you have developed symptoms of the coronavirus then please take advice from your rheumatologist regarding what medication is safe to continue.
Should I be taking vitamin D supplements?
During the autumn and winter months it is generally advised that people living in the UK should take a supplement of vitamin D every day to support general health and in particular, for bone and muscle health. Many people with lupus may already be taking vitamin D supplements because of reduced sun exposure and/or steroid treatment.
If you do not currently take a vitamin D supplement, you may wish to discuss this with your GP. These can often be prescribed for people with lupus due to the increased risk of deficiency.
Should I have the flu vaccine?
For most people, flu is not usually serious and recovery is often expected within a week. However, for certain groups of people, especially those with diseases of the immune system such as lupus, symptoms can last longer and there could be an increased risk of developing complications such as bronchitis or pneumonia. The flu vaccine is available free of charge to everyone with lupus in the UK in order to protect you from the flu and any potential complications.
You can learn more about lupus and the flu vaccine HERE.
We’ve received reports of people with lupus struggling to get appointments for the vaccine at their GP Surgery due to other groups being more highly prioritised. If you are experiencing delays, you may wish to see if any appointments for a free vaccine are available at a local pharmacy.
Should I still attend medical appointments?
Untreated or undertreated lupus can be serious. It is important that you continue to be treated and monitored appropriately throughout the pandemic and that you seek medical advice if you are concerned about your disease. Hospitals are assessing who they think needs to be seen on a case-by-case basis.
If you have a scheduled medical appointment then your clinic should contact you to inform you whether your appointment will still be going ahead, and how.
The British Society for Rheumatology has advised clinicians to provide remote consultations where possible. This includes telephone clinics where your doctor or nurse specialist may call you rather than see you in the hospital clinic. Different hospitals are drawing up separate plans so it is important that you check what your local rheumatology department are doing.
It is very important for you to contact your GP or rheumatology team if you are experiencing a worsening of your disease. By avoiding medical care you could increase your risk of a serious lupus flare.
If you are anxious about attending an important appointment, please discuss with them the precautionary measures they have in place, to reassure you. Many hospitals have a separate rheumatology department where patients can be seen, rather than having to attend the main outpatients department.
If you are concerned about your lupus, by contacting your rheumatology team it won’t necessarily result in an automatic face-to-face appointment. Clinicians will initially assist remotely, where this is appropriate.
What precautions can I take to reduce my risk of contracting the virus?
If you come into contact with somewhere that other people may have been, there are some things that you can do to reduce your risk of catching the virus:
– Wash your hands with soap and water for 20 seconds. Use hand sanitiser gel (with at least 60 percent alcohol) if soap and water are not available. It is especially important to wash your hands more often.
1) when you get to work or arrive home
2) after you blow your nose, cough or sneeze
3) before you eat or handle food
– Do not touch your eyes, nose or mouth if your hands are not clean
– Stay at least 2 metres (6 feet) from people from outside your household/support bubble
For more practical tips on staying safe, see the official guidance on how to stay safe outside your home.
If you are experiencing dry, irritated skin on your hands from increased washing and the use of alcohol hand sanitiser, we have some guidance available HERE.
Should I wear a face covering?
Wearing a face covering may reduce the risk of spreading infection by protecting people you come into contact with. Face coverings do not replace social distancing or handwashing, but combining all these measures gives us the best chance of reducing the spread of COVID-19.
If you can, you’re encouraged to wear a face covering in enclosed spaces where social distancing isn’t possible or when you come into contact with people you do not normally meet. Wearing a face covering is mandatory in some situations. Read the full guidance on face coverings if you live in:
Most people with lupus can manage to wear a face mask for a short period of time and shouldn’t worry if they need to wear one. Wearing a mask does not reduce a person’s oxygen supply or cause a build-up of carbon dioxide.
Face coverings can make breathing feel less comfortable. This is mostly because they trap heat. As the weather gets cooler, and in places with air conditioning, wearing a face covering might feel easier.
It’s a good idea to try out wearing a face covering at home – it might not feel comfortable straight away, so it’s worth wearing one for short intervals around the house to try and get used to wearing one. You can also experiment with different types of covering. The feeling of wearing one might take time to get used to but trying different types and starting with short periods of time can help you feel more comfortable.
A diagnosis of lupus doesn’t make you exempt from wearing a face covering. However, in some circumstances someone with lupus may be exempt, for example;
- If the person has lung involvement and finds wearing a face covering makes them feel too breathless.
- If the person has very sensitive skin on their face which becomes significantly irritated by a face covering.
If you are exempt from wearing a face covering, the Government has produced an official exemption notice for mobile phones and a print-out card and badge – HERE.
Please use a cloth covering and not a mask designed for clinical use. The NHS needs these supplies. Learn how to make your own face covering that covers your mouth and nose HERE.
It is very important that you wash your hands before putting on and taking off your face covering and that you refrain from touching it with unclean hands.
What do I do if I suspect I have symptoms of coronavirus?
NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do.
Use this service if:
– You think you might have coronavirus
– You’ve been in close contact with someone with coronavirus
Getting help in Scotland, Wales or Northern Ireland
– Scotland: call your GP surgery or call 111 if your surgery is not open
– Wales: call 111 (if available in your area) or call 0845 46 47
– Northern Ireland: call 0300 200 7885
DO NOT go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.
Also DO NOT make any changes to your prescribed lupus medications unless directed to do so by your lupus consultant.
If you have a new continuous cough, a high temperature (37.8 degrees or higher) or have experienced loss of smell/taste, you should stay at home and self-isolate for at least 7 days from when your symptoms started.
If you or someone you live with presents with symptoms of the virus the entire household should self-isolate for at least 10 days.
If you are confirmed to have contracted coronavirus (COVID-19), you may be advised by your consultant to temporarily stop immunosuppressive medications until the infection has cleared. This should only be done in consultation with your rheumatology team.
Treatment for coronavirus
Dexamethasone, an anti-inflammatory drug, has been approved to treat all UK hospitalised COVID-19 patients requiring oxygen, including those on ventilators.
Antibiotics do not help, as they do not work against viruses. However, in some cases people can catch a bacterial chest infection along with the virus. If this is the case your doctor will recommend whether you need antibiotics for this.
Treatment aims to relieve the symptoms while your body fights the illness.
You’ll need to stay in isolation away from other people until you’ve recovered and are no longer a risk of infection.
Look after your wellbeing
We’ve all had to adopt significant changes to our lifestyles as a result of the COVID-19 pandemic. For many people with lupus and associated conditions this includes spending a lot more time at home and keeping a safe distance from other people.
During this unusual and stressful time it is perfectly natural to feel overwhelmed. It is important that you continue to look after your physical and mental well-being.
For information and advice on looking after your well-being, take a look at our article HERE.
If you have more questions about the coronavirus, try reading:
NHS: answers to common questions about coronavirus
We are extremely grateful to Dr Chris Wincup (Senior Clinical Research Fellow at University College London), Professor Chris Edwards (Consultant Rheumatologist, University Hospital Southampton) and Dr John Reynolds (Clinical Senior Lecturer in Rheumatology at Queen Elizabeth Hospital, Birmingham) for their assistance in the production of this article.
This article will be updated as new information and guidance becomes available.