The UK has now advised against all “non-essential” travel and contact with others. There are recommendations for people with significant health conditions (including SLE) to take additional precautions such as self-isolating for 12 weeks.
If you are in crisis as a result of these new measures, please contact LUPUS UK by calling 01708 731251 or emailing email@example.com. Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.
The following article has been updated to reflect the changing guidance. The situation is likely to change further over the coming days and weeks. Please check back here regularly for the latest updates as guidance will change.
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?
It is a new strain of virus, so it is not yet known exactly how this coronavirus spreads from person to person. Similar viruses are spread in cough droplets. It’s very unlikely it can be spread through things like packages or food. Viruses like coronavirus cannot live outside the body for very long.
What is the risk of coronavirus in the UK?
The UK Chief Medical Officers have raised the risk to the UK to high. You can read an up-to-date report of risk HERE.
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.
Does my lupus place me in the ‘high-risk’ group for coronavirus?
Data collected so far suggests that people of all ages are at risk of contracting the virus. However, as with most respiratory illnesses, it is likely to be the young, old, and those with chronic health conditions or weakened immune systems who are most at risk once infected.
Systemic Lupus Erythematosus is a chronic health condition and many people living with the condition are likely to have a weakened immune system, most commonly as a result of immunosuppressive medication they are required to take. This means that many people with a diagnosis of lupus would be considered as ‘high-risk’ if they contracted the virus.
Which lupus treatments are immunosuppressive?
Many medications used in the treatment of lupus help to control lupus activity by dampening down the immune system. The following medications weaken your body’s immune response to infections (please bear in mind that this list is not exhaustive):
– High-dose oral steroids (20mg or more daily) [Prednisolone]
– azathioprine [Imuran]
– mycophenolate mofetil (MMF) [CellCept]
– cyclophosphamide [Cytoxan]
– rituximab [Rituxan]
– belimumab [Benlysta]
What about hydroxychloroquine?
Unlike the medications listed above, hydroxychloroquine is known as an immunomodulatory drug and is unlikely to limit your body’s response to infection.
Scientists are currently investigating whether hydroxychloroquine may also offer some protective benefit against the coronavirus (COVID-19). Early studies in China have indicated that chloroquine (a similar anti-malarial historically used to treat lupus) has aided the recovery of patients infected with the virus. It is believed that the activity of hydroxychloroquine on viruses is probably the same as that of chloroquine since the mechanism of action of the two molecules is identical. Studies are ongoing, therefore we are recommending that anyone taking hydroxychloroquine should continue on it unless otherwise advised by their doctor or nurse specialist.
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.
Do I need to stay home from work/school and avoid public places?
UK officials have announced that people aged over-70 or with ‘significant health conditions’ should self-isolate for a period of 12 weeks (you can find the guidance HERE).
The list of ‘significant health conditions’ is the same as the annual influenza vaccine campaign. It is NOT an exhaustive list of diagnoses but rather guidance of the people who should be taking additional precautionary measures. People with a diagnosis of systemic lupus erythematosus should generally have the annual flu vaccine, regardless of current treatment or level of disease activity. Therefore, it is advised that people with SLE self-isolate for 12 weeks. It is not necessary to stay permanently within the home during this period (i.e. you can go for a walk) but it is recommended that you avoid contact with others.
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 should check whether you meet any of the other criteria HERE. 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 not be recommended to self-isolate at this time. If you are uncertain we encourage you to check with your personal medical team.
How to self-isolate
If there’s a chance you could have coronavirus, you may be asked to stay away from other people (self-isolate).
This means you should:
– Stay at home
– Not go to work, school or public places
– Not use public transport or taxis
– Ask friends, family members or delivery services to do errands for you
– Let your doctor or nurse specialist know if you are worried that you may run out of medication if self-isolating
– Try to avoid visitors to your home – it’s OK for friends, family or delivery drivers to drop off food
You may need to do this for up to 14 days to help reduce the possible spread of infection.
Read more coronavirus self-isolation advice HERE.
Mind have produced some excellent resources to help you look after your mental wellbeing if you do need to self-isolate. You can access this HERE.
What precautions can I take to reduce my risk of contracting the virus?
There are some things that you can do to reduce your risk of catching viruses:
– 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
– Try to avoid close contact with people who are unwell
– Do not touch your eyes, nose or mouth if your hands are not clean
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?
UK officials have announced that people aged over-70 or with significant health conditions (including lupus) should self-isolate for a period of 12 weeks. If you have a holiday booked during this time, it would be recommended not to travel.
If you are planning on travelling overseas, it is important to be aware that some countries are currently a higher risk for the virus than others. You can get the most up-to-date advice for overseas travel HERE.
It is important to bear in mind that the situation is changing rapidly and you could be subject to delays in your return journey. For this reason it is essential that you take additional supplies of your medication away with you. Further advice about taking medication on holiday can be found in our article 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 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) for his assistance in the production of this article.
This article will be updated as new information and guidance becomes available.