Lupus & Coronavirus (COVID-19)

Lupus & Coronavirus (COVID-19)

Updated (15/10/2020)

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 as a result of these new measures, please contact LUPUS UK by calling 01708 731251 (Monday to Friday – 9am to 5pm) or emailing headoffice@lupusuk.org.uk 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 generalised.

 

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.

 

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 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 new there is currently little information on the effects of the infection in people with lupus. The COVID-19 Global Rheumatology Alliance has been founded to collect information pertinent to COVID-19 infection in patients with rheumatologic disease. In time it is hoped that research such as this will provide insights about the effect this virus has in people with lupus.

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) Highest Risk (also referred to as ‘high risk’ or ‘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.

 

2) Increased Risk (also referred to as ‘moderate 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. This includes children with conditions such as asthma, diabetes, epilepsy and kidney disease

 

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?

Higher Risk/High Risk/Extremely Vulnerable
Shielding
People who are considered to be “extremely vulnerable” to COVID-19 previously received instructions from the NHS to ‘shield’. 

The shielding guidance was “paused” across the four nations during the summer. The advice could be relaxed because at the time the chances of encountering the virus in the community had fallen compared to when shielding was started. When shielding was paused, those in the “extremely vulnerable” group were advised to follow “strict” social distancing.

On Tuesday 13th October 2020 the government announced that shielding is not being re-introduced in England “at this time”, despite rising levels of coronavirus across most of the nation. It was announced that those who were on the shielding list will receive a letter about the advice and tips on how they should take precautions to avoid contracting COVID-19.

The new guidance states that, in the future, the government will only reintroduce formal shielding advice in the very worst affected local areas and for a limited period of time. It will not automatically be triggered by an area going into the “very high alert” Tier Three. The government will write to you separately to inform you if you are advised to shield. If that happens, people at high risk would again be advised to stay at home, not to go to work or school and limit social interactions to their own household and support bubble.

The new advice is tailored according to the local alert level, using the new three-tier system. You can check the alert level for where you live HERE.

– Strictly observe social distancing
– Meet others outside where possible
– Limit unnecessary journeys on public transport
– Work from home where possible
– People can still go to COVID-secure workplaces if they cannot work from home

– Children should still attend school
– Rule of six applies

 

 

– Reduce the number of different people you meet outside
– Avoid travel except for essential journeys
– Work from home where possible
– Reduce the number of shopping trips made or go at quieter times of the day
– People can still go to COVID-secure workplaces if they cannot work from home

– Children should still attend school
– No meeting other households indoors, unless part of a support bubble
– Rule of six applies outdoors

 

 

– Stay at home as much as possible
– Avoid all but essential travel
– Reduce shopping trips, and if possible use online delivery or support network
– Still go outside for exercise
– Work from home where possible
– People can still go to COVID-secure workplaces if they cannot work from home
– Children should still attend school
– Additional support should be available from local authorities

 

 

Scotland, Wales and Northern Ireland are expected to take similar approaches to England. Their current guidance can be found by following the appropriate link below:

Scotland

Wales

Northern Ireland

Here are some additional tips should you wish to go out:
1. Choose the time and place of your outings carefully to ensure you avoid crowds.
– Early morning and late evening tend to be quieter in most places.
– Open spaces can be easier for people to keep their distance than narrow paths.
– Consider driving to somewhere quieter (but do not share a car with people from another household).

2. 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’ are available from the LUPUS UK shop HERE.

3. 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. 

4. Avoid touching surfaces that could have been touched by others (such as gates, benches etc.)

5. Stay at least 2 metres from other people at all times.

6. Use the toilet before leaving and don’t travel too far from home to avoid using facilities shared by others.

 

Will support still be available if I don’t feel safe shopping or collecting my medication?
At present we are not aware of any plans to restart the food and medicine boxes facilitated by the National Shielding Service. Priority supermarket delivery slots should continue for people who are clinically extremely vulnerable. If you are having trouble ordering online or accessing your priority slot, you are advised to contact the supermarket directly. Your local council should also be able to provide you with local updates and information on community schemes. Find your local council HERE.

 

Will I be forced to return to my workplace?
Employers are being advised to support people who are Clinically Extremely Vulnerable to continue working from home wherever possible. If this is not feasible, you should only return to your workplace if a risk assessment has found it to be COVID-secure. You can learn more about this and your rights in our article HERE.

 

More information about available support, including the NHS Volunteer Responders Programme can be found on our regularly updated page, HERE.

 

Should my child/children continue going to school?
Due to the shielding advice being paused for all adults and children, the small number of pupils who will remain on the shielded patient list are generally advised that they should attend school. This is also the case for children from households where a family member is shielding.

Some pupils no longer required to shield but who generally remain under the care of a specialist health professional may need to discuss their care with their health professional.

Where children are not able to attend school as parents are following clinical and/or public health advice, the absence will not be penalised.

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.

 

 

Increased Risk/Moderate Risk/Vulnerable
‘Strict’ Social Distancing
Unlike people in the high risk 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 complications from COVID-19. Therefore, even though you’re still able to leave your home in line with the government guidelines, 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 that the rest of the population.

  • If you cannot work from home, you may be asked to return to the 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 Risk
‘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 on 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 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 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.

The Hidden Disabilities Scheme has produced lanyard cards for people who are exempt from wearing a face covering. These are available 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

USE THE 111 ONLINE CORONAVIRUS SERVICE

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 14 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.


 

Is there a vaccine for coronavirus?
At present, because this virus is so new and different it does not have a vaccine and needs its own to be developed. Researchers are trying to develop a vaccine and the World Health Organisation is supporting their efforts.

Vaccines against pneumonia do not provide protection against the coronavirus but they are still highly recommended to protect your health from other respiratory illnesses.


 

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.


 

Further Reading
If you have more questions about the coronavirus, try reading:
NHS: answers to common questions about coronavirus

ACAS: Coronavirus – advice for employers and employees

BBC: Coronavirus – advice for people with health conditions

BSR: British Society for Rheumatology – COVID-19 coronavirus update for members

Money Saving Expert: Coronavirus Financial Help & Rights

NICE COVID-19 rapid guideline: rheumatological autoimmune, inflammatory and metabolic bone disorders


 

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.

Print Friendly, PDF & Email