The following article has been updated to reflect the changing guidance. The situation is likely to change further over the coming weeks. Please check back here regularly for the latest updates as guidance will change.
If you are in crisis as a result of these new measures, please contact LUPUS UK by calling 01708 731251 or emailing 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 generalised.
What is coronavirus (COVID-19)?
A coronavirus is a type of virus. As a group, coronaviruses are common across the world. 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 first identified in Wuhan City, China.
How is it spread?
The virus is thought to spread mainly between people who are in close contact with one another (within about 6 feet) through respiratory droplets produced when an infected person coughs or sneezes. These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs.
It may be possible that a person can contract the coronavirus (COVID-19) by touching a surface or object that has the virus on it and then touching their own mouth, nose, or possibly their eyes, but this is not thought to be the main way the virus spreads.
What are the signs and symptoms of coronavirus?
– a cough (in many cases this has been reported as dry and persistent)
– a high temperature
– shortness of breath
But these symptoms do not necessarily mean you have the illness.
The symptoms are similar to other illnesses that are much more common, such as cold and flu.
Generally, coronavirus can cause more severe symptoms, such as pneumonia, in people with weakened immune systems, older people, and those with long-term health conditions.
Am I at risk because of my lupus?
Coronavirus (COVID-19) is a new disease and currently there is limited information regarding risk factors for severe infection. Based on currently available information and clinical expertise, older adults and people of any age who have serious underlying medical conditions are considered to be at higher risk for severe infection from the virus.
Systemic lupus erythematosus (SLE) is a disease which can vary significantly in its presentation and approach to treatment. As such, some people with lupus are likely to be more vulnerable to the virus than others. However, as the virus is very new there is currently very little reported 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.
The British Society for Rheumatology (BSR) produced a risk stratification guide and scoring grid to help doctors and nurses categorise the risk level of their patients with rheumatic diseases (like lupus). The risk level is split into three categories;
- Score of 3 or more (high risk/extremely vulnerable)– the person should be instructed to shield
- Score of 2 (moderate risk/vulnerable) – the person should self-isolate or maintain social distance at their discretion
- Score of 1 or less (lower risk) – the person should maintain social distance
The scores are calculated by adding up the total of all the risk factors that may apply to a patient (it is important to bear in mind that this tool is for all rheumatology patients, not just those with lupus):
* 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
*** Small molecules includes: all JAK inhibitors – baracitinib, tofacitinib etc
The Rheumatology Department at Chapel Allerton Hospital in Leeds have created this 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.
If you are unsure which risk category you belong to, it is best to take as many precautions as you are able. You may try to contact your medical team; however, they are likely to be very busy.
High Risk/Extremely Vulnerable
People who are considered to be ‘extremely vulnerable’ to COVID-19 are receiving 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.
Patients with lupus who are defined as being of High Risk (‘Extremely Vulnerable’) and therefore should shield include;
- Those on high dose steroid treatment (the equivalent of prednisolone 20 mg once a day or more for four or more weeks).
- Those who have had cyclophosphamide treatment within the last six months.
- Those with recent poorly controlled disease / disease flare.
- Those on a lower doses of steroid (equivalent of prednisolone 5 mg a day or more) plus another immunosuppressive drug (not including hydroxychloroquine) .
- Those who are taking two immunosuppressive drugs (not including hydroxychloroquine) and are either aged 70 or over, or have another health problem such as diabetes, heart disease, high blood pressure, kidney disease or lung disease.
Not everyone in the ‘extremely vulnerable’ group has been contacted by the NHS so far. In a letter to all GPs, national director for primary care Nikita Kanani said: “Central data sets are not sophisticated enough to identify all categories of patients who should be included in the vulnerable groups list.” GPs and hospital clinics are currently reviewing their patient registers and conducting risk stratification to identify more patients who need to be instructed to ‘shield’ for 12 weeks.
How to shield yourself
Shielding is for people, including children, who are at 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 measures are:
- 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.
Let your doctor or nurse specialist know if you are worried that you may run out of medication whilst shielding.
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 would expect them to do what they can to support you in shielding and, at the very least, to stringently follow guidance on social distancing. Some measures you can follow are included below:
- Minimise, as much as possible, 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 hand-hygiene purposes.
- If you do 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.
Support for the ‘extremely vulnerable’
If you are in the ‘extremely vulnerable’ group you are advised to register for the government’s support scheme and tell them whether or not you need support. You can use this service to ask for deliveries of essential items like food. The government’s guidance states that “if you’re not sure whether your medical condition makes you extremely vulnerable, register anyway.” – REGISTER HERE
People in the extremely vulnerable group should have received a letter from Wales’ Chief Medical Officer by Monday 6th April 2020. If you have not received this letter and you believe you should be in this group, you are advised to contact your GP. If you have no support from family, friends or community organisations, then from March 31st, you will be able to request a weekly food box. Each free box will provide essential food for one person for a week. If more than one person in your household is shielding, they will also receive food. Individuals who require food boxes or other support are advised to contact their local council using the information provided to them on the letter they receive. More information is available HERE.
The letter from NHS Scotland will tell you how to register for deliveries of food and medicine. It is recommended that you register even if you don’t need support right now because you have family or friends helping. You can read more about the support scheme HERE. If you haven’t received a shielding letter, you can find details for contacting your local authority for support HERE.
If you have received a letter from your GP and you have been asked to shield during the COVID-19 pandemic you may be able to get a weekly food box delivered to your home. Food boxes are available for people who cannot afford food and who do not have a support network of family and friends to help them through this emergency. If you feel you may qualify for a weekly food box you can contact the COVID-19 Community Helpline who will carry out an assessment. Your details will then be passed to partners in the Health Trusts and / or local Councils who will arrange delivery of your weekly food box. The COVID-19 Community Helpline is open 9am to 5pm, seven days a week.
Freephone number: 0808 802 0020. You can also get in touch by email and text message:
Text: ACTION to 81025
More information is available HERE.
Government guidance recommends that people aged over-70 or with ‘significant health conditions’ should practice strict social distancing measures (such as self-isolation) for a period of 12 weeks.
Patients with lupus who are defined as being ‘moderate risk/vulnerable’ and therefore should practice strict social distancing (or self-isolate if they have other concerns or other high-risk circumstances) include;
- Those with well controlled disease with no recent lupus flare, no other health problems and on a single immunosuppressive medicine or regular belimumab or having received rituximab within the previous 12 months.
- Those with well controlled disease with no recent lupus flare, no other health problems and on a single immunosuppressive medicine and hydroxychloroquine.
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 (no unnecessary journeys or social contact)
- Ask friends, family members or delivery services to do errands for you (such as shopping for food or collecting prescriptions)
- Not exercise outside your home
- 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
Mind have produced some excellent resources to help you look after your mental wellbeing. You can access these HERE.
If you live in a shared household, we would expect the people you live with to do what they can to support you in following these strict social distancing rules and, at the very least, to stringently 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.
Support for the ‘vulnerable’
Local councils and community volunteering groups are providing support services for people in the ‘vulnerable’ group. You can find your local council HERE. Information about additional 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 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 guidance available. If this changes an update will be provided on this page.
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 respiratory symptoms then you may be in the ‘lower risk’ group and advised to follow social distancing measures. If you are uncertain we encourage you to check with your personal medical team, however, they are likely to be very busy.
What about hydroxychloroquine?
Unlike immunosuppressants, hydroxychloroquine is known as an immunomodulatory drug and is unlikely to limit your body’s response to infection.
There is growing international interest in this medication as a possible treatment for the coronavirus (COVID-19). At present the trials are ongoing and there isn’t sufficient evidence to conclude whether it will be effective. 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 Saturday 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 groups 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 coronavirus guidance fails to include an essential line; “This list of conditions is not definitive. It’s always an issue of clinical judgement.”
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?
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. If you haven’t heard from your hospital it is important to check with them before travelling to your appointment.
The British Society for Rheumatology has advised clinicians to consider the feasibility of providing remote consultations and implement this where appropriate to reduce the need for patients to attend face-to-face appointments. 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.
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?
The British Lung Foundation says: “We do not recommend using a face mask to protect yourself as there isn’t enough evidence to show how effective they are. Also, for people living with a lung condition wearing a face mask can make breathing more difficult.”
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 for at least a month. 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 OR a high temperature (37.8 degrees or higher), you should stay at home and self-isolate (see below) 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 email@example.com.
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) for his assistance in the production of this article.
This article will be updated as new information and guidance becomes available.