On 1st June 2020 the government’s revised guidance about shielding for people living in England and Wales came into effect. You can see the latest official guidance for England HERE and for Wales HERE. On 8th June 2020 the Scottish government published updates to their guidance, HERE.
The following article has been updated to reflect the new 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 (Mon, Wed or Thur – 9am to 5pm) or emailing email@example.com. 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 guidance 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) Low or Normal Risk:
You would be considered at low/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 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 precautionary measures should I be taking?
Higher Risk/High Risk/Extremely Vulnerable
People who are considered to be ‘extremely vulnerable’ to COVID-19 received instructions from the NHS (in England, Wales, Scotland and Northern Ireland) to ‘shield’ for a minimum of 12 weeks. The text messages and letters began to be issued on the 23rd March 2020. An example of the text message received in England can be seen on the right.
The guidance to shield for 12 weeks was then changed in England, advising people to continue shielding until 30th June 2020.
In Wales, people are advised to continue shielding until at least 16th August 2020.
In Scotland, people are advised to continue shielding until at least 31st July 2020.
How to shield yourself
Shielding is for people, including children, who are considered to be ‘extremely vulnerable’ to coronavirus (COVID-19). Shielding measures should be used when an extremely vulnerable person is living in their own home, with or without additional support. This includes extremely vulnerable people living in long-term care facilities. You can read the official Government guidance on shielding HERE.
The government changed the shielding guidance for people living in England and Wales effective from 1st June 2020 and Northern Ireland from 8th June 2020.
The previous measures were (these still apply to Scotland):
- Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
- Do not leave your house.
- Do not attend any gatherings. This includes gatherings of friends and families in private spaces, for example, family homes, weddings and religious services.
- Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
- Keep in touch using remote technology such as phone, internet, and social media.
The updated guidance advises people who are shielding to continue to take precautions but suggests that they can go outside, if they wish, as long as they can maintain strict social distancing and do not go into other buildings, households, or enclosed spaces.
If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household as long as you maintain social distancing. Ideally, this should be the same person each time. Here are some tips should you wish to go outdoors:
– 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)
– Avoid touching surfaces that could have been touched by others (such as gates, benches etc.)
– Stay at least 2 metres from other people at all times.
This guidance remains advisory. If you do not currently feel comfortable going outdoors, you can continue to shield inside your household as before. In addition, your employer is required to support you in staying away from the workplace for the duration of the shielding guidance.
Let your doctor or nurse specialist know if you are worried that you may run out of medication whilst shielding.
The government says it will now regularly assess the shielding guidance, based on the latest scientific advice. The next review will take place on the week commencing 15th June 2020, and the government will then write to everyone on the shielded patient list with information about the next steps of the shielding advice and the support available to them.
The charity Mind have produced some excellent resources to help you look after your mental wellbeing. You can access these HERE.
Do people I live with need to shield too?
The official guidance states that the rest of your household are not required to adopt these protective shielding measures for themselves. However, we expect they will do what they can to support you in shielding and to carefully follow guidance on social distancing. Some measures you can follow are included below:
- Minimise the time any vulnerable family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
- Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If they can, they should use a separate bathroom from the rest of the household. Make sure to use separate towels from the other people in your house, both for drying after bathing or showering and for after hand-washing.
- If you share a toilet and bathroom, it is important that you clean them every time you use them (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with the vulnerable person using the facilities first.
- If you share a kitchen, avoid using it while any vulnerable people are present. If they can, they should take their meals back to their room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If the vulnerable person is using their own utensils, remember to use a separate tea towel for drying these.
- We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.
Should I let my child/children return to school?
If you are shielding and your child/children are of the age being encouraged to return to school, you will need to make a personal decision about whether they should attend. The current guidance for re-opening schools can be found HERE. Parents will not be fined for non-attendance at this time.
If your child is considered clinically extremely vulnerable/high risk they should continue to shield and therefore not attend school at this time.
What if I think I should be shielding but I haven’t received a letter?
If you believe that you should be classified as ‘high risk/extremely vulnerable’ based on the criteria above but you haven’t received a letter instructing you to shield, you should contact your GP. If your GP agrees that you should be shielding then they can add you to the list and ensure a letter is issued to you.
If you are shielding and need assistance, information about additional support can be found on our regularly updated page, HERE.
Increased Risk/Moderate Risk/Vulnerable
Government guidance recommends that clinically vulnerable people (moderate/increased risk) should practice strict social distancing measures. You are advised to stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household.
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. You should:
- Stay at home as much as possible (no unnecessary journeys)
- Ask friends, family members or delivery services to do errands for you (such as shopping for food or collecting prescriptions)
- Not go to work, school or public places
- Not use public transport or taxis
- Let your doctor or nurse specialist know if you are worried that you may run out of medication
- If you choose to go outside (you must not go to other buildings, households, or enclosed spaces), be very cautious:
– Choose the time and location of your outings carefully to ensure you avoid crowds.
– Ensure you avoid touching surfaces that have been touched by others (such as gates, benches etc.)
– Stay at least 2 metres from other people at all times.
If you live in a shared household, the people you live with should do what they can to support you in following these strict social distancing rules and to carefully follow guidance on social distancing. Further advice for sharing a household can be found in the section ‘Do people I live with need to shield too?’ above.
Information about available support can be found on our regularly updated page, HERE.
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 as in the lower/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 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 ‘lower/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 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). At present trials are ongoing to conclude whether it will be effective. 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. Currently, standard care is not to start hydroxychloroquine for the prevention of COVID-19. 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).
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 (see HERE) and the extremely vulnerable group (see HERE) are taken from the NHS annual influenza vaccination programme (see 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.”
The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) has been in contact with Alex Sobel MP who has agreed to table a parliamentary discussion requesting additional clarity from the NHS and Public Health England for people with autoimmune rheumatic conditions in relation to this guidance. We’ve requested a more comprehensive list of ‘significant health conditions’ to be published with improved guidance.
“The Clinical guide for the management of rheumatology patients during the coronavirus pandemic” published by the NHS on 16th March 2020 clearly states that people with a diagnosis of systemic lupus erythematosus (SLE) are at a ‘high’/‘very high’ risk from the virus. See page 4 HERE.
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 are not shielding or following strict social distancing 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
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 mask?
In England, Scotland, Wales and Northern Ireland you are encouraged, if you can, 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; on public transport or in shops when it’s crowded.
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.
People with breathing problems and children under 2 or others who may find it difficult should not use face coverings.
If you feel comfortable wearing a mask when you’re in a public place and it’s hard to keep 2 metres away from other people, and you chose to wear a mask, please use a cloth covering and not a mask designed for clinical use. The NHS needs these supplies.
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.
Learn how to make your own face covering that covers your mouth and nose HERE.
I have a holiday booked, should I still go?
The Foreign and Commonwealth Office (FCO) have advised that all non-essential foreign travel from the UK should be halted. Their latest guidance is available HERE.
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 recently been to a country or area with a high risk of 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 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.
There have been a few reports about non-steroidal anti-inflammatory drugs (NSAIDs) like Ibuprofen, Diclofenac and Naproxen in people who contract coronavirus (COVID-19) suggesting they could increase the risk of complications from the virus. However, this is currently being debated within the medical community and the advice is not clear. You should speak with your doctor or nurse specialist before discontinuing this medication if already taking it. It is suggested that you should not start taking this medication at this time if you are not on it already. It is very important that you DO NOT stop your steroid dose suddenly. A reduction in oral steroids should always be under your doctor’s supervision.
Treatment for coronavirus
There is currently no specific treatment for coronavirus.
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.
I need to talk to someone
LUPUS UK has services available for you to speak to someone else for support and non-medical advice;
We have trained volunteers, called Contacts, who either have lupus themselves or have a family member with the disease. You can chat with our Contacts over the telephone. They are not medically trained but are there to offer both emotional and general support and signpost you to someone who can advise you. The telephone service is confidential, and you can disclose as much as you wish. The support service is free apart from the cost of the call.
To request details of your local contact CLICK HERE
HealthUnlocked Online Forum
The community is available for free to anybody affected by lupus to get information, support and advice from other people who are similarly affected. We welcome people with any form of lupus (SLE, discoid lupus, drug-induced lupus, cutaneous lupus etc.) as well as those with associated conditions such as mixed connective tissue disease (MCTD) and undifferentiated connective tissue disease (UCTD).
The community discusses a wide range of topics including; diagnosis, symptoms, medical appointments, medications and support available. To join the forum CLICK HERE
If you are in crisis, please call us on 01708 731251 or contact us by email at firstname.lastname@example.org.
Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.
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.