Last updated 08/01/2021
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 has started the COVID-19 vaccination programme, inviting people who are most at risk from coronavirus to be immunised. At present, there are two vaccines approved for use in the UK: the Pfizer/BioNTech vaccine and the Oxford/AstraZeneca vaccine. Both 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 which you can access in full HERE.
The order of priority was based on the number of individuals who would need to be vaccinated to prevent one death, estimated from data obtained from March to June 2020.
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.
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.
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.
The vaccine is currently being offered in some hospitals and hundreds of local vaccination centres run by GPs.
The vaccine will be offered more widely, and at other locations, as soon as possible.
WAIT TO BE CONTACTED
The NHS will let you know when it is your turn to have the vaccine.
It is important not to contact the NHS for a vaccination before then.
How is the COVID-19 vaccine given?
The COVID-19 vaccine is given as an injection into your upper arm. It is given as two separate doses.
The first dose of the COVID-19 vaccine will give you some protection from coronavirus. However, you need to have the two 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 record card with your next appointment written on it for an appointment.
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 week or two 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.
The NHS will offer a COVID-19 vaccination to all people who are in the ‘clinically extremely vulnerable’ group and those with underlying health conditions putting them at higher risk of serious disease and mortality. Whether you are offered the vaccine may depend on the severity of your condition. If you are unsure which risk category you are in, take a look at our article HERE.
The UK Government has specifically listed ‘lupus’ as one of the health conditions for which adults will be offered the vaccine – see HERE.
If you have 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. It is important not to contact the NHS for a vaccination before then. We will advise you when/if this guidance changes.
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.
So far, tens-of-thousands of people have been given a COVID-19 vaccine in clinical trials (significantly larger numbers of people have now also received their first dose of the vaccine through the NHS – more than 1 million in the UK) and no serious side-effects or complications have been reported.
The vaccine does not contain living organisms (they are not ‘live’), and so is currently considered safe for people with disorders of the immune system.
At present, there is no evidence from trials of this vaccine in groups of people with underlying health conditions such as lupus. It is therefore not currently known whether the vaccine may trigger a general flare in some cases.
You can read more about why vaccines are safe and important HERE.
According to the JCVI Green Book there are very few individuals who cannot receive the vaccine.
The guidance for those in doubt is to seek advice from the relevant health care practitioner.
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?
It is recommended that individuals who have immunosuppression should be given the COVID-19 vaccine 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.
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.
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
If you have a known anaphylactic (severe allergic) reaction to any of the components of the vaccine, you will be advised not to have the vaccination.
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 history of “significant” allergic reactions
If you have a history of “significant” allergic reactions, such as anaphylactic reaction, it has been advised by the MHRA that you do not have the Pfizer/BioNTech vaccine. This is regardless of whether your history of allergic reactions was to something not included in the components of the vaccine. The Oxford/AstraZeneca vaccine can be used as an alternative (if not otherwise contraindicated).
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 the two 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?
We do not yet know whether the COVID-19 vaccine will stop you passing on the virus. So, it is important to follow 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.
Which COVID-19 vaccine will I be given?
At present, there are two vaccines approved for use in the UK: the Pfizer/BioNTech vaccine and the Oxford/AstraZeneca vaccine.
There have been no clinical trials directly comparing the Pfizer/BioNTech and Oxford/AstraZeneca 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. Both 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.