Lupus & Coronavirus (COVID-19)

Lupus & Coronavirus (COVID-19)

Updated (11/08/2020)

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 ‘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.

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 comes following evidence from paediatric clinicians showing that COVID-19 poses a low risk to most children and young people.

Children will 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 will be asked to contact children and their families to discuss this over the summer, so families do not need to take any immediate action.

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.


 

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 (in England, Wales, Scotland and Northern Ireland) to ‘shield’. The guidance for shielding has changed over time.

On 1st August 2020 the shielding guidance was “paused” in most of England, Scotland and Northern Ireland. It is scheduled to be paused in Wales from 16th August 2020. The UK government says that the advice could be relaxed because the chances of encountering the virus in the community have fallen compared to when shielding was started. People who were previously shielding would now be advised to follow ‘strict’ social distancing.

What does this mean?

  • If you wish, you do not need to follow previous shielding advice
  • If you cannot work from home, you may be asked to return to the workplace as long as it is COVID-secure.
  • If you wish, you can go outside as much as you like but you should still try to keep your overall social interactions low.
  • If you wish, you can go to supermarkets, pubs and shops, whilst keeping 2 meters away from others wherever possible. You may prefer to ask family, friends or local support services to continue to collect your shopping and/or medications.

 

It is important to remember that the COVID-19 hasn’t completely gone away and you may still be at risk of severe illness if you were to contract it. It is therefore safest to stay at home as much as you can and continue to take precautions when you do go out.

Here are some tips should you wish to go outdoors:
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.

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. Hidden Disability Sunflower Lanyards that say ‘I have lupus’ are available from the LUPUS UK shop HERE.

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.

 

Is it really safe to pause shielding? Why now?

Shielding is a restrictive measure and the government does not want to be advising anyone to follow these measures for longer than is necessary. Average incidence of the virus across the country remains lower now than the point when the decision was made to proceed with the pausing of shielding nationally. The UK governments review the epidemiological picture across each nation on a weekly basis. Where incidence and transmission rates are increasing, it will take a more targeted approach to shielding advice at Local Authority level.

 

Is the government planning on telling us to ‘shield’ again in the future?

Your name will be kept securely on the shielded patient list by NHS Digital so, if the government advice changes, they can write to you and ensure you can access the support you need. The government regularly monitors this position and if the rates of infection in the community rise, then it may be necessary to change the guidance and advise people to resume shielding

 

What action should I take if my local area has a lockdown?

Those living in areas under local lockdown measures who are classed as clinically extremely vulnerable should follow the guidance on their local council’s website (find yours HERE). If you live in an area where additional public health measures require you to resume shielding, the government should write to you and advise you to stay at home and shield.   

 

Will support still be available if I don’t feel safe shopping or collecting my medication?

The food and medicine boxes facilitated by the National Shielding Service are to be stopped when shielding guidance is paused. Priority supermarket delivery slots will 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.

 

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 I let my child/children return 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 can return to 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 before returning to school.

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 returning to 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 a slightly 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.
  • If you wish, you can go outside as much as you like but you should still try to keep your overall social interactions low.
  • 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.
  • If you wish, you can go to supermarkets, pubs and shops, whilst keeping 2 meters away from others wherever possible. 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. Hidden Disability Sunflower Lanyards that say ‘I have lupus’ are available from the LUPUS UK shop HERE.

 

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.

On 4th April 2020 President Donald Trump made a claim about a study suggesting that people with the autoimmune disease lupus were not as affected by coronavirus because they were already taking hydroxychloroquine. There is NO EVIDENCE to back up his claim or to suggest that taking hydroxychloroquine is effective in preventing a person from contracting the coronavirus (COVID-19).

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 of people with an increased risk of severe illness from coronavirus are available using the links below:

Clinically Vulnerable (increased/moderate risk) – HERE

Clinically Extremely Vulnerable (highest risk) – HERE

The government’s guidance for the ‘clinically Vulnerable’ group fails to include an essential category which is now included on the ‘Clinically Extremely Vulnerable’ group; “Other people have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions.”


 

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 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?
In the UK you are 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, for example; in shops when it’s crowded.

England
Face coverings are mandatory:
– On public transport.
– As a hospital outpatient or visitor.
– In shops.

Scotland
Face coverings are mandatory:
– On public transport.
– In shops.

Wales
Three-layer face coverings are mandatory:
– On public transport.

Northern Ireland
Face coverings are mandatory:
– On public transport.
– In shops.

Some people will be exempt from the new rules including:

  • Children below a certain age (please check local regulations)
  • Those with breathing difficulties.
  • Those who cannot put on, wear, or remove a face covering because of a physical or mental illness or impairment or disability, or without severe distress.
  • Anyone travelling with someone who relies on lip reading

 

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.

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.

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.

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