Last updated 01/04/2021
In this article we will do our best to provide reliable information and guidance about COVID-19 vaccination for people with lupus. This will be updated regularly over the coming weeks and months as new information becomes available – please check back frequently.
People with lupus often have very different symptoms and treatments from each other and we are unable to give advice on case-by-case basis; some guidance may therefore be very general.
Who can get the COVID-19 vaccine?
The NHS COVID-19 vaccination programme is initially inviting people who are most at risk from coronavirus to be immunised. At present, there are three vaccines approved for use in the UK: the Pfizer/BioNTech vaccine, the Oxford/AstraZeneca vaccine and the Moderna* vaccine (*due to be available from spring 2021). These vaccines have met strict standards of safety, quality and effectiveness set out by the independent Medicines and Healthcare products Regulatory Agency (MHRA).
Other COVID-19 vaccines are being trialled and may be approved for use in the UK by the MHRA. This article will be updated when/if further vaccines are approved for use by the NHS.
The Joint Committee on Vaccination and Immunisation (JCVI) has issued advice about the priority groups, HERE.
This priority list is as follows:
1. Residents in a care home for older adults and their carers.
2. All those 80 years of age and over and frontline health and social care workers.
3. All those 75 years of age and over.
4. All those 70 years of age and over and ‘clinically extremely vulnerable’ individuals (including some people with lupus).
5. All those 65 years of age and over.
6. All those aged 16 to 64 years with health conditions putting them at higher risk of serious disease/mortality (including lupus and main carers for someone with lupus, and those living with someone taking immunosuppressive medications).
7. All those 60 years of age and over.
8. All those 55 years of age and over.
9. All those 50 years of age and over.
UPDATE: On 29th March 2021, the JCVI issued new advice to the Government, recommending that people who are over 16 and living with adults who have weakened immune systems, such as those with blood cancer, HIV or those on immunosuppressive treatments should be prioritised for vaccination as part of Priority Group 6. Immunosuppressive medications are often used in the treatment of lupus. These can include, but are not limited to:
Azathioprine, Leflunomide, Methotrexate, Mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, Tacrolimus, Sirolimus, rituximab, belimumab, anifrolumab, all anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab and biosimilar variants of all of these); tociluzimab; abatacept; anakinra; seukinumab; ixekizumab; ustekinumab; sarilumumab; canakinumab.
It does NOT include hydroxychloroquine or sulphasalazine, either alone or in combination.
Which Priority Group should I be in?
Due to the varied presentations and treatments for lupus, not everyone with lupus is considered to be at the same risk of severe illness from COVID-19 vaccination. As a result, if we exclude age, people with a diagnosis of systemic lupus erythematosus (SLE) will be in either Priority Group 4 or Priority Group 6.
Priority Group 4
If you are considered to be “clinically extremely vulnerable” then you would be in Priority Group 4 for vaccination. People who are “clinically extremely vulnerable” should have been advised to shield during the national lockdowns by letter/email/text message. If you are not sure whether you are “clinically extremely vulnerable” please read the section “Am I at risk because of my lupus?”, HERE.
Priority Group 6
Any person aged 16-64 with a diagnosis of systemic lupus erythematosus (SLE) who is not considered “clinically extremely vulnerable” should be included in Priority Group 6, regardless of current medication.
LUPUS UK has received a significant number of reports from people with lupus who have been told they are not in Priority Group 6 – often by GP Receptionists. This is incorrect and we encourage patients to challenge this with their GP/Consultant if possible. The source of the problem is that ‘lupus’ is not explicitly stated on all lists of conditions for Priority Group 6 which are circulated by the NHS. It is important to recognise that these lists are not exhaustive – it would not be possible to include every rare disease putting someone at higher risk of serious disease from COVID-19. The JCVI Green Book confirms on page 12 that the examples are not exhaustive and clinical judgement should be applied to to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from COVID-19 itself.
‘Lupus’ has been included in the list of conditions for priority vaccination on the Government website HERE, and in a Press Release from the Department of Health and Social Care (DHSC) on 14/03/2021, HERE.
Cutaneous Lupus, Mixed Connective Tissue Disease (MCTD) and Undifferentiated Connective Tissue Disease (UCTD)
If you have cutaneous lupus erythematosus (CLE) – a type of lupus that typically only affects the skin and hair – or a lupus-related condition such as Undifferentiated Connective Tissue Disease (UCTD) or Mixed Connective Tissue Disease (MCTD) it is likely you will be invited to have the vaccine, but it may depend on the severity of your condition and medications you take. You should wait to be contacted. The NHS will let you know when it is your turn to have the vaccine.
Have I been missed out?
The COVID-19 vaccination rollout is progressing quickly across the UK. The Government has set some key milestone targets for vaccination which have been agreed by governments in England, Wales, Scotland and Northern Ireland. These targets are:
Deadline of 13th February 2021 – Invite Priority Groups 1 to 4 – all residents and staff at care homes for older people, health and care workers, people aged over 70 years old and those considered “clinically extremely vulnerable” (approximately 15 million people).
Deadline of mid-April 2021 – Invite Priority Groups 5-9 – all over-50s and those aged 16 to 64 years with health conditions putting them at higher risk of serious disease/mortality (approximately 32 million people).
Deadline of end of July 2021 – Invite all adults.
The progress and method of the vaccine rollout does vary slightly between England, Scotland, Wales and Northern Ireland.
The latest updates about the COVID-19 vaccine rollout for England can be found HERE.
Any adults who have a diagnosis of lupus and haven’t been invited for their first dose of the COVID-19 vaccine are now recommended to book their vaccine online (HERE) or call 199. This also applies to people who are the main carer for someone at risk from COVID-19. If you are an unpaid carer and not currently registered, you can learn how to do this HERE.
The latest updates about the COVID-19 vaccine rollout for Scotland can be found HERE.
Any adult who is considered “clinically extremely vulnerable” who has not been invited for their vaccine should contact their GP.
NHS Scotland is currently inviting everyone aged 55 and over, those aged 16 to 64 with underlying health conditions which put them at higher risk of serious disease and mortality and unpaid carers aged 16 to 64. If you are in one of these groups, you should receive an invitation for your first dose by mid-April. Please wait to be contacted. If you are an unpaid carer, you can register HERE.
The latest updates about the COVID-19 vaccine rollout for Wales can be found HERE.
Each Health Board in Wales has a different set of instructions about who is currently being invited for vaccination. To find the current guidance for your local Health Board, please go HERE. If you are an unpaid carer and not currently registered, you can find forms to do this with your local Health Board HERE.
The latest updates about the COVID-19 vaccine rollout for Northern Ireland can be found HERE.
If you are aged 50 or over, considered “clinically extremely vulnerable” or the main carer of an at risk person, you can now book your vaccination online. You can learn more about this HERE. Anyone aged 18-49 with an underlying health condition putting them at higher risk of serious disease/mortality is being vaccinated by GP Practices. If you are in this group there is no need to contact your GP, as they will invite people to receive the vaccine based on their vaccine supply. This phase of the programme will take several weeks to complete.
If you are an unpaid carer and have been unable to book an appointment through the online booking platform or call centre, you should contact your local Trust care co-ordinator. You can find contact details for yours HERE.
How is the COVID-19 vaccine given?
When you are eligible for vaccination, you will be contacted directly. You will receive a letter, phone call or text message to schedule your appointment. You may be invited to have your vaccination at a hospital, a large vaccination centre, a GP practice, a pharmacy or other local site. You may receive multiple invitations – you should choose the option that suits you best.
If you are unable to travel to any of the locations offered in your invitation or there is another reason you can’t book an appointment, you can choose to wait until your local GP services contact you, if they haven’t already. If you would rather do that, you do not need to do anything now – just wait for your GP services to contact you. More locations will also become available in the coming weeks so you could also try again later.
Arrival & Pre-Vaccination
Upon arrival at your vaccination centre you will be greeted by someone to check that you do not have symptoms that would prevent you from having the vaccination. If you are booked in to a large vaccination centre, you will need to bring your booking reference number with you (this will be on your letter).
You will be asked some questions about your medical history, asked to give consent to have the vaccination and have the opportunity to ask any questions.
All places that offer vaccinations will have precautionary measures in place to prevent the spread of coronavirus. It is expected that everyone will be observing social distancing and you will be expected to wear a face covering.
The COVID-19 vaccine is given as an injection into your upper arm. You may be asked to wait up to 15 minutes after receiving the vaccination so that you can receive urgent care in the very rare event of an allergic reaction. If you feel unwell for any reason after receiving the vaccine, you should let the staff know.
The first dose of the COVID-19 vaccine will give you some protection from coronavirus. However, you need to have both doses of the vaccine to give you the best protection. The vaccine trials suggest that the second dose of the Pfizer/BioNTech vaccine should be given after a minimum of 21 days and the second dose of the Oxford/AstraZeneca vaccine should be given after a minimum of 28 days.
The NHS will be routinely scheduling the second doses between four and twelve weeks after the first dose. This will allow more people to benefit from the protection provided from the first dose during the roll-out phase. Evidence from the Phase 3 trials indicate high levels of protection against serious disease and death from around two weeks after the first dose. This change to the dosing intervals has been supported by the British Society of Immunology in a statement you can read HERE.
When you have your first dose, you should receive a leaflet and a record card with your next appointment (within 12 weeks) written on it. Your second dose will be administered at the same venue as your first dose.
It is important to have both doses of the vaccine to give you the best protection.
Keep your record card safe and make sure you keep your next appointment to get your second dose.
Additional COVID-19 vaccines are being trialled and their method of administration may vary. We will update this information and guidance as new vaccines are approved for use by the NHS.
Should people with lupus have the COVID-19 vaccine?
COVID-19 infection can be very serious, and in some cases fatal, for some people; especially older adults and those with some long-term health conditions.
The COVID-19 vaccination will reduce the chance of you getting severe COVID-19 disease and therefore it is generally recommended that people with lupus should have the vaccine. It may take a few weeks after vaccination for your body to build up protection. No vaccine is 100% effective – some people may still get COVID-19 after having a vaccination, but this should be less severe.
Is the COVID-19 vaccine safe for people with lupus?
Any coronavirus vaccine that is approved must go through all the clinical trials and safety checks all other licensed medicines go through. The UK has some of the highest safety standards in the world.
Tens-of-thousands of people have been given a COVID-19 vaccine in clinical trials (whilst significantly larger numbers of people have now also received their first dose of the vaccine through the NHS – many millions in the UK) and no serious side-effects or complications have been reported.
There is currently no evidence to suggest that people with lupus should not be administered the COVID-19 vaccines. However, the clinical trials for the vaccines primarily recruited healthy volunteers, therefore at present, we have limited evidence about the effect of the vaccines in people with health conditions such as lupus. UK researchers are studying the safety and efficacy of the vaccines in people with lupus during the rollout, so our understanding will improve significantly over time.
According to the JCVI Green Book there are very few individuals who cannot receive the vaccine.
You can learn more about how the COVID-19 vaccines were developed so quickly in this helpful short video from the National Institute for Health Research (NIHR).
You can read more about why vaccines are safe and important HERE.
If you would like to read about the experiences of lupus patients being administered the COVID-19 vaccines, please take a look at our online community forum, where many members have been sharing about this – https://healthunlocked.com/lupusuk
The guidance for those in doubt is to seek advice from the relevant health care practitioner.
Should I have the vaccine if I’m experiencing a lupus flare?
A lupus “flare” is when your lupus symptoms worsen and you feel ill as a result. The formal definition of a flare is: “A measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements”.
If you are experiencing a lupus flare, it is recommended that you discuss the timing of your vaccination with your consultant. Your consultant will be able to recommend whether you should have your vaccine as scheduled, or to delay until the flare has passed.
What about people with a weakened immune system and those taking immunosuppressant medication(s)?
It is common for people with lupus to have a weakened immune system, either because of the disease itself, or more commonly, due to taking immunosuppressant medications.
Which medications are immunosuppressants?
Steroids can weaken your immune response, especially when taken as a daily dose of 20mg or higher.
Immunosuppressive medications include:
- Mycophenolate (mycophenolate mofetil or mycophenolic acid)
- This list is not exhaustive
It does NOT include hydroxychloroquine or sulphasalazine.
Biologic medications include:
- This list is not exhaustive
What effect will immunosuppression have on the vaccine?
Some early findings from clinical studies examining the efficacy of the vaccines in people with weakened immune systems have indicated that the vaccines provide lower levels of protection in adults who are immunosuppressed and that those with ‘severe immunosuppression’ are therefore more likely to suffer poor outcomes following infection and are less likely to benefit from the vaccines offered.
Despite this, it is recommended that individuals who have immunosuppression should be given COVID-19 vaccination in accordance with other recommendations and contraindications.
These individuals may not make a full antibody response and should therefore continue to follow advice to avoid exposure unless they are advised otherwise by their doctor.
All three vaccines currently approved for use in the UK (Pfizer/BioNTech, Oxford/AstraZeneca and Moderna) are safe for people with weakened or suppressed immune systems.
There has been some confusion and misunderstanding about the Oxford/AstraZeneca vaccine, especially following a BBC interview with Prof David Salisbury. The Oxford/AstraZeneca vaccine is not strictly considered to be a ‘live’ vaccine although it does contain a live, non-replicating adenovirus vector. Adenovirus vector vaccines have been trialled in populations with high prevalence of HIV and shown no serious adverse events. It cannot replicate in humans and does not make more virions, and therefore it is perfectly safe in the immunocompromised.
Should I temporarily stop my medication when I have the vaccine?
There is currently no evidence available to make a firm recommendation in this area.
The COVID-19 vaccine requires two doses which are administered three to twelve weeks apart. This would require a significant pause to treatment as a result and therefore it is unlikely to be recommended due to the risk of lupus flares.
Advice may vary on a case-by-case basis to maximise the chance of effect from the vaccine whilst managing lupus disease activity. It is important to discuss the timing of your vaccine with your consultant if you are due to have an infusion of rituximab.
What should I do if I am due to start an immunosuppressant medication soon?
Some people may be due to start on a new immunosuppressant medication, especially if they are newly diagnosed, experiencing a flare or unable to tolerate other treatments.
The JCVI Green Book Chapter 14a was updated on 21st January 2021. The updated guidance recommends that any patients who are due to receive planned immunosuppressive therapy should be considered for vaccination (ideally two weeks) before commencing that treatment. Where possible, it is also advised to complete both doses of the vaccine before commencing immunosuppression – this would involve offering the second vaccine dose at the recommended minimum (three or four weeks). Any decision to defer immunosuppressive therapy or to delay possible benefit from vaccination needs to be carefully considered.
Should the people I live with be vaccinated?
On 29th March 2021, the JCVI issued new advice to the Government, recommending that people who are over 16 and living with adults who have weakened immune systems, such as those with blood cancer, HIV or those on immunosuppressive treatments should be prioritised for vaccination. If you are receiving an immunosuppressive treatment, then anyone aged 16 and over in your household is also eligible for vaccination as a priority. If they have not received an initiation, they can make enquiries to book their first dose.
What should I do if I am taking anticoagulation therapy?
Approximately 1-in-5 people with SLE will also have an overlapping diagnosis of antiphospholipid syndrome (learn more about this HERE). As a result, some lupus patients will be taking anticoagulation medication (blood thinners), such as aspirin or warfarin.
Thrombosis UK have provided helpful guidance for anyone taking this type of medication:
Individuals receiving direct oral anticoagulant (apixaban, dabigatran, edoxaban & rivaroxaban) or warfarin in therapeutic INR range, on full dose heparin or fondaparinux injections or antiplatelet medications such as aspirin and clopidogrel can all receive the COVID-19 vaccination.
Please beware of the following issues:
- There is a risk of bruising at the injection site, but we do not anticipate any serious effects related to anticoagulation.
- We suggest that after the injection, prolonged pressure (at least 5 minutes) should be applied to the injection site to reduce bruising.
- Patients on warfarin with supra-therapeutic INR should wait until their INR is <4.0.
- We encourage patients to have vaccinations and they should not be avoided on the basis of being on anticoagulation treatment.
Who SHOULD NOT have the COVID-19 vaccine?
Women who are pregnant or breastfeeding
There is no evidence that the COVID-19 vaccine is unsafe if you are pregnant or breastfeeding. However, more evidence is needed before this group of people can be routinely offered the vaccine.
The JCVI has updated its advice and now recommends that you may be able to have the vaccine if you are:
- pregnant and at high risk of serious complications of coronavirus
- if you are breastfeeding
Speak to a healthcare professional before you have the vaccination. They will discuss the benefits and risks of the COVID-19 vaccine with you. The latest COVID-19 vaccine guidance for pregnant and breastfeeding women can be found HERE.
A person with a confirmed anaphylactic reaction to any components of the vaccine
A very small number of individuals have experienced anaphylaxis when vaccinated with the Pfizer/BioNTech vaccine. Following close surveillance of the vaccine roll-out, the MHRA has updated its guidance regarding COVID-19 vaccination in people with a history of severe allergic reactions.
Individuals with a history of anaphylaxis to any vaccine, medicine or food, can receive any COVID-19 vaccine as long as they are not allergic to any component (excipient) of the vaccine.
The British Society for Allergy and Clinical Immunology has advised that individuals with a history of immediate-onset anaphylaxis to multiple classes of drugs or unexplained anaphylaxis should not be vaccinated with the Pfizer/BioNtech vaccine. The AstraZeneca vaccine can be used as an alternative (if not otherwise contraindicated).
Both the Pfizer/BioNTech and the Oxford/AstraZeneca vaccines do not contain any animal products or egg. The full contents of the Pfizer/BioNTech vaccine can be found HERE (in Appendix One). The full contents of the Oxford/AstraZeneca vaccine can be found HERE (in Appendix Two).
A person with a confirmed anaphylactic reaction to a previous dose of COVID-19 vaccine
If a person experienced an anaphylactic (severe allergic) reaction to their first dose of the COVID-19 vaccine, they would be instructed not to have the second dose.
You should also wait to have your vaccination (first or second dose) if:
- you are currently unwell with a fever.
- you have had another vaccine in the 7 days before your planned appointment.
- you have had a positive COVID-19 test or new COVID-19 symptoms in the last 28 days.
- you have had a deterioration following prolonged COVID-19.
Is the COVID-19 vaccine effective?
The first dose of the COVID-19 vaccine will most likely give you good protection from coronavirus. However, you need to have both doses of the vaccine to give you the best protection. It also seems important to have both doses of the vaccine for longer-term protection from the virus.
Evidence from the Phase 3 trials indicate high levels of protection against serious disease and death from around two weeks after the first dose.
Like all medicines, no vaccine is completely effective – some people may still get COVID-19 despite having a vaccination, but this should be less severe.
This means it is important to continue following social distancing guidance.
Will the vaccine stop someone from spreading the virus?
Early findings, which are not yet formally published, suggest that the Oxford/AstraZeneca vaccine may contribute to reducing the spread of the virus – you can read about this HERE. However, there is currently no sufficient evidence to indicate that the COVID-19 vaccine will stop you passing on the virus. It is therefore very important to continue following the guidance in your local area to protect those around you.
Does the COVID-19 vaccine have side-effects?
Like all medicines, vaccines can cause side-effects. Most of these are mild and short-term, and not everyone gets them.
Very common side-effects include:
- having a painful, heavy feeling and tenderness in the arm where you had your injection. This tends to be worst around 1-2 days after the vaccine.
- feeling tired.
- general aches, or mild flu-like symptoms.
It is not possible to contract COVID-19 infection from having the vaccination.
Although feeling feverish is not uncommon for 2 to 3 days, a high temperature is unusual and may indicate you have COVID-19 or another infection. You can rest and if you would normally be able to safely take painkillers, such as a normal dose of paracetamol (follow the advice in the packaging), then you can do so to help you feel better.
Symptoms following vaccination normally last less than a week. If your symptoms seem to get worse or if you are concerned, call NHS 111. Even if you do have symptoms after the first dose, you will most likely be recommended to have the second dose. Although you may get some protection from the first dose, having the second dose will give you the best protection against the virus. However, this advice may depend on the severity of your side-effects and you should discuss this with your consultant if unsure.
If you do seek advice from a doctor or nurse, make sure you tell them about your vaccination (show them the vaccination card if possible) so that they can assess you properly.
You can also report suspected side effects to vaccines and medicines online through the Yellow Card scheme.
It is very rare for anyone to have a serious reaction to the vaccine (anaphylaxis). If this does happen, it usually happens within minutes. Staff giving the vaccine are trained to deal with allergic reactions and treat them immediately.
If you would like to read about the experiences of lupus patients being administered the COVID-19 vaccines, please take a look at our online community forum, where many members have been sharing about this – https://healthunlocked.com/lupusuk
Which COVID-19 vaccine will I be given?
At present, there are three vaccines approved for use in the UK: the Pfizer/BioNTech vaccine, the Oxford/AstraZeneca vaccine and the Moderna vaccine (which is expected to be available from spring 2021).
There have been no clinical trials directly comparing the vaccines. In trials of the vaccines, efficacy against symptomatic disease seemed higher for the Pfizer/BioNTech vaccine than for the Oxford/AstraZeneca vaccine. However, differences in study setting, study design, study population (age, ethnicity, social demographics, etc), and efficacy endpoints may account for some of the observed differences. All the approved vaccines give very high protection against severe disease, which is the primary aim of the first phase of the programme, and both vaccines have good safety profiles.
Therefore, there is currently insufficient evidence to make a recommendation of a specific vaccine for people with underlying conditions such as lupus.
The JCVI does not advise a preference for either vaccine in any specific population. For operational and programmatic reasons, such as to enable more extensive and timely vaccine coverage, one vaccine may be offered in certain settings in preference over another vaccine.
Patients will not be offered a choice of vaccine preference and it is therefore recommended that you accept the vaccine that you are offered when you are invited by the NHS to be immunised.
You should receive both doses of the same type of vaccine. The information about the vaccine you receive will be clearly stated on your vaccination record card.
NHS – Coronavirus (COVID-19) vaccine
We are extremely grateful to Prof Chris Edwards (Consultant Rheumatologist, University Hospital Southampton) and Dr Rona Smith (Clinical Lecturer in Nephrology and Experimental Medicine, Addenbrooke’s Hospital) for reviewing the content of this article.