Updated February 2022. Research in August 2021 has revealed that people with rare autoimmune rheumatic diseases are at an increased risk of developing Covid-19 and subsequently dying from it.
Updated 5th November 2021. Vaccines & the immunosuppressed.
Updated 10th december 2020 (see link at the bottom regarding the vaccine)
Lupus affects patients very differently, the severity varies greatly, some people are on medication and some are not. It is not therefore possible to give one statement that would cover all lupus patients. So let us try to clarify things as best we can about how at risk lupus patients are.
Guidance from NHS England states that patients with lupus will generally fall into two categories of risk grading; high or very high. The use of immunosuppressants is relevant to defining risk.
The following drugs put a lupus patient at increased risk. If a patient is on more than one of the drugs on this list, their overall risk is further increased:
Prednisolone 10mgs daily or more
Methotrexate
Leflunomide
Azathioprine
Mycophenolate mofetil
Myfortic
Cyclophosphamide
Ciclosporin
Tacrolimus
Rituximab
Belimumab
Tocilizumab
JAK inhibitors
Anakinra
There are other factors that also increase risk such as disease activity, kidney involvement (nephritis), lung and heart disease, the presence of other conditions and pregnancy or older age.
Patients must not suddenly stop prednisolone and should only stop on advice of their doctor.
Patients who contract confirmed coronavirus should stop their immunosuppressive therapy until the symptoms improve. Prednisolone and hydroxychloroquine should be continued. Patients who deteriorate with severe breathlessness should seek immediate medical attention.
Self isolation and social distancing
Patients on any of the drugs on the list above should self isolate for 12 weeks especially if their lupus is active and they have major organ involvement such as kidney, lung or heart disease.
Patients taking hydroxychloroquine or no medication should self isolate if practical, as the less contact people have the better, otherwise they should follow the social distancing advice given by the government.
The advice is changing almost daily as we learn more about covid-19 and we will update our page as we receive new information.
More excellent advice from Dr Amir Khan on weakened immune systems.
Discoid Lupus Erythematosus (DLE)
Discoid lupus is an autoimmune disease, which means discoid lupus patients could be at risk for complications due to the coronavirus. If discoid (DLE) patients are only on Hydroxychloroquine and have no systemic symptoms, they would fall into the low risk category and should practice social distancing like everyone else. This also applies to DLE patients using retinoids or topical steroids and who are not taking oral steroids or immune suppressing drugs and have no other serious illness.
General Advice/Precautions (updated returning to work links)
We would advise lupus patients to follow the precaution information given by the NHS. For up to date advice please visit the NHS website which is updated at least daily.
Official government advice on coronavirus.
This is the updated guidance from British Society for Rheumatology.
Working safely during coronavirus outbreak information
It’s worth checking back regularly with the links above as the information can change daily.
Medication
Make sure you have refills of all your medication (but don’t stockpile), talk to your pharmacy regarding home delivery options and continue taking your medication as prescribed, do not stop taking medication unless advised to do so by your specialist.
Immunosuppresive medication
The following advice is from the British Society of Rheumatology regarding patients on immunosuppressive medication: “If patients develop symptoms of any infection, established practice should be followed and immunosuppressive therapy paused for the duration of the infection and until they feel well, in consultation with their rheumatology team. The expectation is for those on glucocorticoids (steroids, prednisolone) where treatment should not be stopped abruptly and advice should be sought from their treating team”. For the full article please see link above.
Hydroxychloroquine
Hydroxychloroquine is being used to treat covid19 but in much higher doses than for lupus patients. This should not result in shortages for patients as HCQ is very widely available and treatment is only for 2 weeks.
The preliminary published articles are using massive doses of chloroquine and HCQ (up to three times the usual daily doses) but only for short periods of time up to 5 days.
There is no data that being on HCQ will protect patients from developing coronavirus but they should certainly continue taking the drug at the usual dose. The research on antimalarials is all on patients with active infection, there are no studies on the use of antimalarials for prevention.
Research articles are pointing towards the treatment looking very promising. Further article from the Lupus Research Alliance here.
May 2020: With all the news on Hydroxychloroquine in the news Guys & St Thomas’ have udpated their information here.
