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Updated 22 July

You can find our COVID-19 guidance below.

This advice is for clinicians and we cannot answer individual patient queries. Those looking for further information are advised to speak to their GP or rheumatology team, who are best placed to answer specific questions.

Versus Arthritis has produced a guide for patients covering some of the most frequently asked questions.

What is the advice for CEV patients from 19 July 2021?

We understand many patients may be concerned about relaxing restrictions from 19 July. The UK Government has updated the guidance for clinically extremely vulnerable people in England. CEV people are advised to take extra precautions to protect themselves.

A letter has been sent to clinicians from the Deputy Chief Medical Officer and NHSE/I Chief Medical Officer to provide an update on the latest guidance for clinically extremely vulnerable people. The letter acknowledges that some immunocompromised and immunosuppressed individuals may not respond as well to the COVID-19 vaccine. Advice about COVID-19 risk should be considered as part of an ongoing dialogue around general infection risk for these patients.

The full removal of restrictions on 19 July 2021 applies to England only, and some restrictions will remain in place in Scotland, Wales and Northern Ireland.

Scotland is moving to level 0 from 19 July 2021 with CEV patients asked to continue to follow the advice of the general population.

Wales has moved to alert Level 1 of its COVID restrictions, and will move to level 0 on 7 August 2021, dependent on the data.

Northern Ireland will be relaxing some COVID restrictions from 26 July 2021.

What information is there on COVID-19 vaccination?

Three vaccines are authorised by Medicines and Healthcare products Regulatory Agency (MHRA) for use in the UK: Pfizer/BioNTech, Oxford/AstraZeneca and Moderna. None of these vaccines are considered live and all are safe for use in immunosuppressed patients.

Immunosuppressed patients, as a result of medication or disease, are at high risk of severe illness from COVID-19. All patients should be encouraged to receive a COVID-19 vaccine, regardless of treatment regimen or underlying diagnosis. The benefits of the COVID-19 vaccination outweigh the risks and by having the vaccine, they reduce the risk of developing severe complications due to COVID-19.

Find out more: ‘Principles of COVID-19 vaccination in musculoskeletal (MSK) and rheumatology’ (BSR contributed to and endorsed this).

How effective is the vaccine in immunosuppressed and immunocompromised patients? 

Some patients on immunosuppression may not have mounted as good of a response to the vaccine.

Data from Public Health England shows for those who are immunosuppressed, vaccine effectiveness against symptomatic infection is 4% after a first dose rising to 74% after a second dose. This amounts to broadly similar protection levels to those who are not in a risk group.

These figures are based on very small numbers of events in a subgroup with symptomatic disease, and so further work is needed to evaluate vaccine efficacy in specific groups.

OCTAVE is a multicentre observational study in Glasgow, which is evaluating immune (including antibody and T cell) responses in patients with a range of chronic rheumatic conditions on specific immunomodulatory (steroids, MTX and biologic) treatments. These patients were largely excluded from previous COVID-19 vaccine studies. It is expected data from this study will be published in late August or September.

What about COVID-19 boosters?

The most vulnerable people may be offered COVID-19 vaccine boosters from September 2021. These will prolong the protection that vaccines provide ahead of winter. The final JCVI advice will be published in September and will account for the current epidemiological situation.

The OCTAVE-DUO study is also evaluating boosters for the immunosuppressed and should be able to report to JCVI by late August or early September.

How are groups prioritised for the vaccine?

The JCVI ranks priority groups according to risk, largely based on prevention of COVID-19-specific mortality. CEV patients were offered the vaccine alongside those aged 70-74 (priority group 4).

All adults in the UK have now been offered a vaccine.

More information can be found here.

What advice is there on vaccinating immunosuppressed patients?

Green Book guidance on vaccinating patients about to receive planned immunosuppressive therapy:

  • Vaccinate before starting therapy (ideally at least two weeks before) when their immune system is better able to make a response
  • Where possible, complete their two-dose schedule beforehand; offer the second dose at the recommended minimum for that vaccine (three or four weeks from the first dose) to provide maximum benefit
Adult household contacts of severely immunosuppressed individuals

On 31 March 2021, the NHS wrote to GPs to ask them to identify individuals in priority groups 4 and 6, to write to these individuals and to inform them that adult (over 16 years of age) household contacts are now eligible to receive the COVID-19 vaccine alongside priority group 6. Adult household contacts are individuals who expect to share living accommodation on most days; continuing contact is unavoidable. The JCVI advises this will reduce risk of infection.

Household contacts must provide their household contact letter and formal identification when attending their vaccine appointment. The NHS also wrote to medical directors to inform them of the JCVI advice and asked them to cascade this information to relevant departments and clinical teams.

If possible, your rheumatology team can organise vaccination at your acute trust, or inform the immunosuppressed individual’s GP that their household contacts are eligible for vaccination, as well as advising the individual to contact their registered GP.

Should rheumatology treatment be paused or changed?

Patients should not pause their treatment to have the COVID-19 vaccine but rheumatology teams need to liaise with patients on rituximab about the timing of the vaccine and starting rituximab or their next infusion if on a maintenance dose.

What impact does rituximab treatment have on COVID-19 vaccines?

Existing guidance prior to the pandemic is that patients should be up-to-date with vaccinations before rituximab treatment, as vaccination may not be as effective if given after. We advise that:

  • Where clinically possible, COVID-19 vaccines should be given four weeks or more before rituximab
  • Be aware that there may be a sub-optimal response to COVID-19 vaccines, especially for people within six months of the last dose of rituximab, or those who must have maintenance treatment due to their underlying clinical condition
  • Where clinically appropriate, consideration should be given to using alternative therapies to rituximab, because of the potential that after rituximab there may be sub-optimal response to COVID-19 vaccines. This should be on a case-by-case basis, balancing the need for rituximab and the suitability of alternative therapies for the relevant clinical situation.
If it's not possible to time the administration of the vaccine with the course/start of immunosuppression treatment, benefits vs risk needs to be considered and discussed with the patient and a shared decision made. Patients are still advised to receive a COVID-19 vaccine.

The following summarises the advice for the likely scenarios:

  • If a patient is offered a date for vaccination, vaccinate and delay rituximab for four weeks where clinically appropriate
  • If vaccine is available now for the patient but patient is still B-cell depleted on rituximab, do not delay vaccination until B-cells recover but vaccinate now. There is no evidence to suggest how long after rituximab a patient should delay vaccination with a COVID-19 vaccine, but consensus suggests this should ideally be 4-8 weeks after rituximab if it is ok to defer a COVID-19 vaccine. This decision may depend upon the prevalence of COVID-19. A shared decision should be made with the patient
  • If vaccine isn't available now for the patient, and it’s not safe to delay rituximab for four weeks because of organ or life-threatening disease, give rituximab without delay and vaccinate whenever a vaccine is subsequently available
  • If a vaccine isn't available now, and it is safe to delay rituximab or to switch to an alternative treatment, consider these options. A shared decision should be made with the patient
What impact does corticosteroid treatment have on COVID-19 vaccination?

This advice applies to corticosteroids (oral, intra-articular, intra-muscular or IV). The risks and benefits must be weighed and discussed with the patient. It is safe to have the COVID-19 vaccine alongside steroid exposure, but the patient may not mount as good an immune response:

  • Do not delay vaccination for someone who is taking, has received or is soon to receive steroids in any form
  • If additional steroids are required to control inflammatory disease, that may take priority, as a flare can also worsen the risk from COVID-19
Should children and young people (CYP) receive the vaccine?

Clinically vulnerable children aged 12-15 and those living with vulnerable adults will be offered the vaccine first, based on advice from the JCVI. Those 16 years and over with specific clinical vulnerabilities were already able to access the vaccine (see RCPCH advice).

The first study assessing safety and immune response to the COVID-19 vaccine in children and young people has now opened, focusing on those aged 6-17 years and the Oxford/AstraZeneca (ChAdOx1 nCoV-19) vaccine. This NIHR-funded study is run by University of Oxford, together with partner sites in London, Southampton and Bristol.

Further information

Should immunosuppressed patients be returning to work?

While the UK Government is no longer instructing people to work from home or to maintain social distancing at work, many immunosuppressed people may remain uncomfortable with the prospect of returning to work. Employers have a legal obligation to protect their employees from harm at work and should be making efforts to put controls in place to reduce the risk to vulnerable employees. Further information about work and employee rights can be found in the guidance.

Are there any changes to the self-isolation rules for NHS and social care staff?

Double vaccinated frontline NHS and social care staff in England who have been told to self-isolate will be permitted to attend work in exceptional circumstances and replaced by testing mitigations. This will include staff who have been contacted as a close contact of a case of COVID-19 by NHS Test and Trace, or advised to self-isolate by the NHS Covid-19 app.

This measure is being introduced to alleviate pressure on NHS and social care services and will be contingent on staff members only working after having a negative PCR test and also taking daily negative lateral flow tests for a minimum of seven days, and up to 10 days or completion of the identified self-isolation period.

What about antibody testing?

It may be possible to give someone an indication of their mitigated, but not eliminated, risk against COVID-19 disease based on past infection status or vaccination status, as identified by antibodies or medical records. This cannot at present be used to assure protection from infection, but the presence of detectable circulating antibodies will almost certainly result in a mitigation of severe disease on re-exposure. Antibody titres over time and so risk assessment cannot be extrapolated indefinitely. Guidance will shortly be made available to assist primary healthcare workers in discussions with patients regarding antibody status and immune response.

Is there any specific advice on how patients should be managed during this pandemic?

NICE has published a ‘rapid guideline’ on rheumatological autoimmune, inflammatory and metabolic bone disorders, focusing on how to manage disorders during the COVID-19 pandemic, while protecting staff and patients from infection. It also enables services to make the best use of NHS resources. NHSE has also published a clinical guide on managing rheumatology patients during the pandemic.

BSR has published guidance on how to restart services, based on the current impact of COVID-19 and key constraints, such as staffing levels and access to other key elements of practice such as imaging and infusion services.

In Wales, some adult and paediatric and adolescent rheumatology services have been included in the Welsh Government’s guidance, 'Maintaining essential health services during the COVID-19 pandemic – summary of services deemed essential'. This updated advice should be read in conjunction with the Winter Protection Plan: NHS Wales Operating Framework Quarters 3&4, 2020/2.

NICE has published guidance on arranging planned care in hospitals and diagnostic services to help healthcare professionals deliver efficient planned care while minimising the risk of COVID-19 in the context of increasing or decreasing local prevalence. It also aims to help patients make decisions about their planned care. It is for adults, young people and children in hospitals and diagnostic settings. Planned care covers elective surgery (day surgery and inpatient stays), interventional procedures, diagnostics and imaging. It does not include services where people have ongoing outpatient and day-case procedures such as chemotherapy, radiotherapy and dialysis.

Self-management resources for those with MSK conditions have been developed by the MSK Leadership Group, supported by NHS England and NHS Improvement. This helps with the delivery of virtual healthcare at this time.

How should services be prioritised in community settings?

In summer 2020, NHS England published a guide on Implementing phase 3 of the NHS response to the COVID-19 pandemic, which includes guidance on the restoration of adult and older people’s community health services.

In December 2020, Amanda Pritchard (NHS Chief Executive) and Julian Kelley (NHS Chief Financial Officer) set out the priorities for the NHS over the winter. While responding to COVID-19 and implementing the COVID-19 vaccination programme remain top priorities, they also ask services to maximise capacity in all settings to treat non-COVID-19 patients.

How do I determine whether my patient is clinically extremely vulnerable?

According to the government’s guidance on clinically extremely vulnerable people, adults on immunosuppression therapies sufficient to significantly increase risk of infection are considered clinically extremely vulnerable (CEV). CEV people will have previously received a letter from the NHS and/or their GP explaining what this means for them in the summer. They will also (if they haven’t already) receive a further letter explaining the new guidance during this second lockdown.

Please refer to our risk stratification guide for rheumatology, which provides more detail, in determining the level of risk to your patients and defining whether they are considered CEV. The CEV group are those patients who, in the guide, are in the 'Shield' column. With regards to children and young people, BSR's risk stratification guide has been superseded by the RCPCH shielding update.

A paper published in Clinical Medicine explaining the process undertaken to identify our patient group for shielding

Northern Ireland
For other patients asking what precautions they should take, please refer them to Versus Arthritis’s patient information.

Should patients cease their medication as a precaution against COVID-19?

All patients, including those aged 16 years and under, should continue to take their medication unless directed otherwise by their rheumatology team or GP. If you are planning to start or switch a patient to a new medication this may now need to be reviewed. Patients on long-term glucocorticoids (steroids, prednisolone) should not stop these abruptly.

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. For those on glucocorticoids, the expectation is that treatment should not be stopped abruptly and advice should be sought from their treating team.

How do I manage patients on long-term steroids at risk of adrenal suppression?

The Society for Endocrinology has produced guidance for management of patients with adrenal insufficiency who have COVID-19. This guidance applies to any patient who has been taking 5mg prednisolone or more for four weeks or longer, as this may cause adrenal insufficiency.

As noted in the British National Formulary, adrenal insufficiency due to steroid therapy can persist even after a patient has tapered their prednisolone dose below 5mg, so many rheumatology patients currently taking <5mg prednisolone are also at risk of adrenal insufficiency (see paper published in European Journal of Endocrinology).

Patients with adrenal insufficiency need to temporarily increase their steroid dose if they have any significant intercurrent infection. Patients with COVID-19 may have high fever or other systemic symptoms for many hours of the day. In COVID-19, therefore, the standard advice to double the prednisolone dose in the event of significant intercurrent illness may not be sufficient. This can be applied to rheumatology patients as follows:

  • Patients on 5-15 mg prednisolone daily: take 10 mg prednisolone every 12 hours
  • Patients on oral prednisolone >15 mg: continue their usual dose but take it split into two equal doses of at least 10 mg every 12 hours
  • Patients with COVID-19 may have large insensible water losses, and should be advised to drink plenty of fluids, especially if they may have adrenal insufficiency
  • Patients can be issued with the NHS emergency steroid card, which signposts healthcare providers to the latest guidance on management of adrenal crisis

What’s the most appropriate treatment option if treatment needs starting or escalating?

Patients will be nervous about starting any treatment that might increase their risk of infection. A discussion on treatment options should take place that should include consideration of demographic factors and co-morbidities known to be associated with increased risk of serious infection and complications of COVID-19 (e.g. increasing age, especially >70 years, or for those with co-morbidities such as diabetes mellitus, chronic lung disease and ischaemic heart disease).

For patients starting DMARDS, consider using those with a shorter half-life (particularly for those at highest risk of serious infection and complications of COVID-19). If appropriate, opt for sulfasalazine and/or hydroxychloroquine rather than methotrexate or leflunomide.

Similarly, for patients starting biologic or small molecule inhibitors or switching biologic drugs, careful discussion with the patient is essential, taking into account patient-specific risk factors that increase risk of serious infection and complications of COVID-19.

If there is significant disease activity and the patient understands the risk, then it is acceptable to move forward with these drugs. Again, we advise considering the use of drugs with the shortest half-life (eg etanercept, JAKi). We're aware that some homecare providers stopped new registrations and were not sending out nurses to demonstrate how to give the first injection, but these problems have now been resolved.

Should I still be injecting corticosteroids during the current COVID-19 pandemic?

As is current practice, injections must not be undertaken in individuals with active infections. In the current situation, the potential therefore arises to do harm to those who may be incubating or later develop COVID-19. Current WHO guidance for the management of severe acute respiratory infection in patients with COVID-19 is to avoid giving systemic corticosteroids unless indicated for another reason.

We have supported guidance on the management of patients with musculoskeletal and rheumatic conditions who are on corticosteroids, require initiation of oral/IV corticosteroids and require corticosteroid injection. This updates the previous guidance, and can be read here.

What is the role of Vitamin D supplementation?

NHS England: guidance on vitamin D supplementation is that if you're not going outdoors often, you should consider taking a daily supplement with 10 micrograms of vitamin D.

What about frequency of blood testing?

Members may need to be flexible about blood testing for patients on stable DMARDs in the current pandemic. It is usually safe to reduce blood testing frequency to three-monthly or even less in stable patients. Departments will need to review cases on an individual basis and weigh up the risks of continuing without blood testing, compared to the benefit of staying on DMARDS.

What's the latest advice for children, young people and their families?

In the last few months a small number of children and young people were identified as acutely unwell, often requiring paediatric and adolescent intensive care unit (PICU) input, with an unusual hyperinflammatory condition (PIMS-TS). This rare syndrome shares common features with other paediatric and adolescent inflammatory conditions including Kawasaki disease and forms of toxic shock syndrome. The RCPCH has produced guidance to address this.

The British Paediatric Surveillance Unit (BPSU) has launched a system for reporting cases of PIMS-TS. BPSU is a centre for rare paediatric and adolescent disease surveillance, investigating how many children in the UK and Republic of Ireland are affected by particular rare diseases, conditions or treatments each year.


Should immunosuppressed patients be offered alternative clinic appointments?

We know many departments may still be struggling to see patients face-to-face due to social distancing requirements. Many patients may also remain apprehensive about attending appointments in person, and so it is advised that telephone/video appointments remain available. However, patients should understand that if their disease is active clinicians may not be able to escalate their treatment without assessing them in-person.

What's the updated shielding guidance and advice on returning to school for children and young people (CYP)?

The RCPCH’s advice has changed due to evidence available across Europe. There is no evidence that children and young people with rheumatological or inflammatory conditions are more likely to be infected with COVID-19 than those without, nor is there any evidence that if infected with COVID-19, that they will become more unwell compared to children without these conditions. This includes individuals on immunosuppressive medications. These children and young people should now attend school in accordance with government advice.

Please refer to the RCPCH guidance for more information. The update is under ‘notes on other conditions’.

Medical Directors and Paediatric Clinical Directors will cascade lists to paediatricians as a matter of urgency. This list contains the names of patients classified as clinically extremely vulnerable.?Paediatricians are being asked to review that list in line with RCPCH advice, and take steps to remove patients who are inappropriately listed. If children are not removed from this list, and shielding is reinstated, it is highly likely that children will be removed from school settings inappropriately.

Additional advice:

Is there any specific advice for health professionals considered at risk?

Immunosuppressed healthcare workers should ensure that their line manager/clinical lead, occupational health and treating rheumatologist are all aware of their medication and scope of practice. Healthcare professionals should follow the advice of their rheumatology team.

According to emerging UK and international data, people from Black, Asian and Minority Ethnic (BAME) backgrounds are being disproportionately affected by COVID-19. The Department for Health and Social Care asked Public Health England to investigate; prior to the publication of their report and guidance, on a precautionary basis, it's recommended by the NHS that employers should risk-assess staff at potentially greater risk and make appropriate arrangements accordingly.

Is there any rheumatology-specific data on the impact of coronavirus to date?

The COVID-19 Global Rheumatology Register has now published factors associated with COVID-19-related death in people with rheumatic diseases.

Rheumatology study shows that people over 35 with rare autoimmune rheumatic diseases are at heightened risk of dying during the pandemic. The RECORDER project (Registration of Complex Rare Diseases Exemplars in Rheumatology) looked at 170,000 health records and found that in March and April, 1.1% of people with these diseases died. This is .6% higher than the general population during this period, and 1.4 times higher than this community’s average mortality rate over the last five years.

Other main findings include:
  • Women with rare autoimmune rheumatic diseases had a similar risk of death to men during COVID-19 – whereas usually their risk of death is lower
  • The risk of working-age people with rare autoimmune rheumatic diseases dying during COVID-19 was similar to that of someone 20 years older in the general population
We're supporting two initiatives helping inform practice:
  • EULAR COVID-19 Database: the European Data portal for EU and other European patients (children, young people and adults) is now live. The database isn’t classed as a research study and UK NHS ethics approval is not required. There’s no requirement for patient consent and the database collects anonymised patient data only. Clinicians are encouraged to report all cases of COVID-19 in their rheumatology patients, regardless of severity, and to report cases where there’s been a high suspicion of COVID-19, and to indicate that this is unconfirmed. Reporting a case should take 5-7 minutes
  • European Patient Registry: EULAR and PRES support a patient self-report register. Patients register and enter their own data

What ongoing trials are there?

  • RECOVERY trial: four different treatment regiments for COVID-19
  • RECOVERY 2: further randomisation of patients who've already consented and been rand randomised to the RECOVERY trial. If they remain unwell with a CRP>75mg/L and an ongoing requirement for oxygen, they’ll receive either standard care or a single infusion of Tocilizumab, which can be repeated 12-24 hours after the first if there’s an inadequate response
Rheumatologists have much more familiarity with and experience of the use and risks of tocilizumab than acute physicians and intensivists likely to be responsible for the clinical care of these patients, and we encourage all UK rheumatologists to contact their local R&D leads if they have not already done so, to discuss how they can support recruitment to RECOVERY2.

Where can I access further advice?

The most up-to-date advice and guidance for clinicians can be found here. We would encourage members and patients to refer to this information for any queries. If you’d like to discuss a specific issue, you can also contact the Policy team.

For advice specific to any of the devolved nations, please refer to each nation's public health body:

What resources are available to patients recovering from COVID-19?

Your COVID Recovery is an NHS website providing health advice, guidance and links to support for people who have ongoing symptoms and health needs after COVID-19. There are specific sections about fatigue and musculoskeletal, shoulder and back pain.

What information is available on approved treatments for COVID-19 and their implications for rheumatology?

NHSE published an interim clinical commissioning policy on tocilizumab for critically unwell patients with COVID-19 pneumonia. The exclusion criteria advises: "Tocilizumab should not be given to patients with a pre-existing condition or treatment resulting in ongoing immunosuppression".

We encourage rheumatologists to liaise with medical and intensive care colleagues to discuss rheumatology patients already on immunosuppressive medications and whether tocilizumab is appropriate, as there may be circumstances where this exclusion criteria isn't applicable.