Lupus & Coronavirus (COVID-19) *UPDATED*

Coronavirus COVID-19 - The Hibbs Lupus Trust

This page was originally published on 10 March 2020, and was last updated on 19 May 2020. This advice will be updated as more information becomes available.

The latest information can still be found on gov.uk and the NHS websites.

Shielding

If you have been advised to shield, you should continue to do so until you are told otherwise.

Read about shielding and who should shield on the Gov.UK website.

Staying at home, keeping safe and social distancing

Find out more about what you can and can’t do during the coronavirus outbreak on the Gov.UK website (updated 11 May 2020). 

Please note, this guidance applies to England only. People in Wales, Scotland and Northern Ireland should follow the information given below.

Please see the latest information staying at home and self-isolating for households with potential coronavirus infection.

Global Rheumatology Alliance

Read more about Global Rheumatology Alliance – COVID-19 Patient Survey. This survey is for adult patients with a rheumatic illness or the parents of a child with a rheumatic illness. They hope to obtain insights about how best to prevent or treat COVID19.

Patient Information

Find Out More About the Risk Score [pdf 970 kb]

Please note that every lupus patient is different. If you have specific questions about your condition and/or any new symptoms, you should speak to a member of your healthcare team.

The current advice is that you should not stop taking your medications unless advised to do so by your rheumatologist or rheumatology nurse. By stopping your medication, you’re more likely to have a ‘flare’, which could make you more likely to pick up an infection. If you have concerns about your medication, speak to a member of your healthcare team.

From the 23rd March the NHS have started contacting patients deemed ‘extremely vulnerable’ to provide instructions on shielding. This will include many people with lupus. Full guidance on shielding is below along with information on assessing if you are in this group.

Shielding advice for high-risk groups

What is shielding?

Shielding is a measure to protect extremely vulnerable people by minimising interaction between those who are extremely vulnerable and others. This means that those who are extremely vulnerable should not leave their homes, and within their homes should minimise all non-essential contact with other members of their household. This is to protect those who are at very high risk of severe illness from coronavirus (COVID-19) from coming into contact with the virus.

The Government has released guidelines for people who are at higher risk, we strongly recommend you follow this guidance if you are in one of the high-risk groups.

Information and guidance from the Rheumatology Team at The Royal Wolverhampton NHS Trust:

Video guide:

Advice for Rheumatology Patients Video.

Important Information:

Rheumatology Advice for Patients Regarding Coronavirus (PDF, 917Kb)

Advice for our HIGHEST RISK patients only:

Read the advice for the our highest risk patients only (PDF, 964Kb)

How can I know if I am very high risk? 

This image has an empty alt attribute; its file name is How-can-I-know-if-I-am-very-high-risk.jpg

‘At risk’ groups

The below NHS guide published on the 16th March 2020 states that people with a diagnosis of systemic lupus erythematosus (SLE) are at a ‘high’/‘very high’ risk from the virus ( see page 4).

Clinical guide for the management of rheumatology patients during the coronavirus pandemic

Self Isolation

Generally the flu vaccination is advised for lupus patients and therefore you would be seen as ‘at risk’ and should be self isolating at home for 12 weeks. 

If your entire household is unable to isolate, for instance if you are living with ‘key workers’ then these steps will help to reduce the chances of infection.

  • 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 vulnerable 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 they use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
  • If you do share a toilet and bathroom with a vulnerable person, 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 with a vulnerable person, avoid using it while they 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.

How do you look after your mental wellbeing?

Social isolation, reduction in physical activity, unpredictability and changes in routine can all contribute to increasing stress. Many people including those without existing mental health needs may feel anxious about this impact including support with daily living, ongoing care arrangements with health providers, support with medication and changes in their daily routines. How to protect your mental health – read more here!

What is coronavirus?

COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus. Novel coronavirus (COVID-19) is a new strain of coronavirus first identified in Wuhan City, China.

Symptoms of coronavirus

The symptoms of coronavirus are:

  • a cough
  • 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.

How coronavirus is spread

Because it’s a new illness, we do not know exactly how 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.

Do I need to avoid public places?

Most people can continue to go to work, school and other public places.

You only need to stay away from public places (self-isolate) if advised to by the 111 online coronavirus service or a medical professional.

How to avoid catching or spreading coronavirus

Do

  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin straight away and wash your hands afterwards
  • try to avoid close contact with people who are unwell

Don’t

  • do not touch your eyes, nose or mouth if your hands are not clean

Check if you need medical help

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
  • in the last 14 days you’ve been to a country or area with a high risk of coronavirus – see our coronavirus advice for travellers
  • you’ve been in close contact with someone with coronavirus

Use the 111 coronavirus service

Do not go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.

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
  • Northern Ireland: call 111

How to self-isolate if you’re asked to

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
  • 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.

Treatment for coronavirus

There is currently no specific treatment for coronavirus.

Antibiotics do not help, as they do not work against viruses.

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.

Government response and action plan

We’ll continue to update this page as we know more.

Thank you for all of the comments below, we are working through these as quickly as possible and replying directly. If you have specific questions about your condition and/or any new symptoms, you should speak to a member of your healthcare team.

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24 Comments

  1. Anna Nicolaides on March 18, 2020 at 06:35

    Thank you..

  2. Denise Nicholson on March 19, 2020 at 17:31

    My partner has Lupus nephritis. Should my whole family be self isolating with him.

    • John Hibbs on March 20, 2020 at 17:18

      If your entire household is unable to isolate, for instance if you are living with ‘key workers’ then these steps will help to reduce the chances of infection.

      *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 vulnerable 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 they use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.

      *If you do share a toilet and bathroom with a vulnerable person, 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 with a vulnerable person, avoid using it while they 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.

      • Rose on March 21, 2020 at 23:13

        Are people with Discoid lupus also a high risk category?

        • John Hibbs on March 23, 2020 at 15:05

          Hi Rose, if you are not usually advised to have an annual flu vaccine, are not on immunosuppressive treatment, do not have a history of respiratory symptoms they you may not be in the ‘high-risk’ category but please note that every lupus patient is different. If you have specific questions about your condition and/or any new symptoms, you should speak to a member of your healthcare team.

          • Helen on April 11, 2020 at 17:12

            Hi,I have SLE and I usually work at the hospital.The ward I work on has been turned into a covid ward,I don’t want to take any risks so have been off for 3 weeks,I still wouldn’t feel safe going back now what do you think?



        • Jan on April 15, 2020 at 18:05

          I have antiphospholipid antibidy. My sister has SLE.
          I am front line NHS.
          Am I safe ?

      • Isobel Henderson on April 1, 2020 at 16:09

        Hi I have SLE and it’s caused shrinking lung syndrome been on prednisolone since 2003 have high blood pressure too do you think I’m high risk or vunerable

        • John Hibbs on April 1, 2020 at 19:43

          Hi Isobel, I have sent you an email, stay safe, John

  3. Lynn on March 24, 2020 at 15:20

    Hi my daughter has sle, with associated associated comorbid conditions and eds with joinst dislocating gastroparesis the list is endless, should she be in 12 week isolation? Thanks

  4. Mandy on March 31, 2020 at 17:01

    I have discoid lupus, antiphospholipid syndrome and fibromyalgia however my blood tests are coming back borderline for sle should I be isolating for 12 weeks?
    Thanks in advance

    • John Hibbs on March 31, 2020 at 17:28

      Hi Mandy, I have sent you an email, stay safe, John

  5. karen turner on March 31, 2020 at 19:48

    I have lupus and colitis and take mercaptopurine but have not received a letter ,so am I ok to go to work as a support worker?

    • John Hibbs on April 1, 2020 at 19:42

      Hi Karen, I have sent you an email, stay safe, John

  6. Jean Hunter on April 3, 2020 at 12:07

    I have sle lupus I take methotrexate hydroxychloroquine I also have my annual flu vaccination should I be self isolating

    • Pmel on April 19, 2020 at 20:53

      Hi I’m diagnosed with discoid lupus on hydroxychloroquine 400g but on waiting list to be tested for sle as I have alot of symptoms but unfortunately rheumatology is abit of a wait I had the flu twice last year really bad like every time I’m I’ll I suffer I had it for 4 weeks each time would what category would I be in if I did fall into one thank you

  7. Parm on April 5, 2020 at 17:29

    Hi I have sle and take hydroxchroloquine and it is generally well maintained with a couple of flares each year. Managed to come of steroids last year. I workIn the nhs as a radiographer, Patient contact is now kept to aN absolute minimum, is there anything else I can do ? Thx you

  8. Susan Gooding on April 7, 2020 at 08:28

    Hi I have lupus SLE , auto immune liver disease with overlapping pbc, connective tissue disorder and fibromyalgia. However I am on a very lose dose of medication, the minimum you can have. I have a letter. I take 3mg budesonide , 100mg of azathiroprine, hydroxychloroquine 400mg and 300mg ursideoxychloric acid and vitamin D 1500mg a day. My condition apart from the fibromyalgia aspect is well controlled with very little impact on my daily life. So how much am I actually at risk?

  9. Dante on April 10, 2020 at 14:09

    Hi, John, I suffer from SLE, have a 3rd grade kidney damage, taking mycophenolate, hydroxichloroquin and ramipril, was on prednisolone for a long time, and just before the virus my doctor wanted to put me back on it. I refused it, so he gave me a trial period. Keep getting text message that I am in a high risk group, but no letter came yet. Should I expect a letter too? Having 2 jobs, one of that is a delivery driver, I would be in a very hard financialy situation if I had to drop off that. Thank you for your answer.

  10. Terina on April 12, 2020 at 20:13

    I have lupus and was initially told by my gp to isolate , I hadn’t received a letter , after leaving a message at my rheumatology dept asking if I could have one to show my employer I get a call back saying I wasn’t even at risk at all …..?! Is this true if I’m not in flare I am no risk at all? I’m not on meds ( I usually take ibuprofen if I get painful joints ) But none the less I still have lupus, where to I stand ? I have been off all this time because I was told to but I’m refused a letter yet Sainsbury’s and Asda emailed saying they received government data letting them know I’m a ‘vulnerable customer’ ……

  11. Mihaela on April 14, 2020 at 10:00

    Hi,I have diagnosis of DLE,IgA neprophaty,Fibromyalgia and coeliac disease.Going through a flare of it right now.I am NHS frontline worker.Everyone seems to be uncertIn if I should or should not selfisolate,I developed flu like symptoms after caring for few end of life patients,no fever,been tested by GP,awaiting result and overall going through a really bad flare.Suppose to go back work if testing negative,don’t know how I am going to cope.

    • Freda on April 27, 2020 at 23:15

      Hi
      I have had my letter to shielding
      I am worried that I am not getting my blood and urine checked from Rhumetologist plus I receive a injection every 8 weeks B12 I have to get this on 30th April my treatment room is closed so I phoned my gp and they gave me a number of a health centre this was my gp receptionist told me to phone them I have to go down am I safe to do this under shielding

  12. Carol on April 25, 2020 at 21:50

    Hi I have systemic lupus that has caused pleuresy and I have antiphosolipid syndrome. My occupation is dental assistant. I work in very close proximity to patients mouths and the high speed handpieces causing aerosole spray. I am concerned that all of this puts me at a higher risk of getting covid 19 and complications. What are your thought?

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