NASS has advice and guidance on COVID-19 for people living with axial SpA
Updated 19 May 2022
Since the start of the COVID19 pandemic NASS has carefully monitored the situation for people living with axial SpA . This page includes the answers to your most frequently asked questions. If you have a question which we haven’t covered below please contact the NASS Helpline on 0208 741 1515 between 10:00 and 16:00 Monday to Friday. You can also email email@example.com
Download an article on the COVID19 vaccine written by Dr Antoni Chan, Consultant Rheumatologist at the Royal Berkshire NHS Foundation Trust and published in the NASS members magazine, AS News. COVID19 Vaccine information
More detailed information on the COVID19 vaccination programme can be found in the Greenbook.
Research on the COVID19 vaccine specifically relating to people with rheumatic and musculoskeletal diseases can be found towards the bottom of this page.
The COVID vaccine programme for people who are immunosupressed
The Joint Committee on Vaccination and Immunisation (JCVI) advised that additional doses should be offered to people aged 12 years and over who are immunosuppressed. This group includes those taking:
- biologic therapy (including anti TNF and anti Il-17A)
- high-dose corticosteroids (20mg or more of prednisolone per day) for more than 10 days in the previous month
- long-term moderate dose corticosteroids (10mg of prednisolone per day for more than 4 weeks) in the previous 3 months
- methotrexate (more than 20 mg per week either as a tablet or injection is the dose recommended by the JCVI but the British Society for Rheumatology recommend it for anyone on more than 10mg per week)
- certain combination therapies at individual doses lower than above (e.g. 7.5mg prednisolone per day in combination with sulfasalazine)
The updated guidance is that you should have two doses, at least eight weeks apart followed by a third primary dose. You should then have the booster dose and , after that a fifth, Spring dose, is being offered.
People are advised to wait 6 months since their previous dose to get maximum protection from a spring booster. The appointment dates you’ll be offered start from 3 months (91 days) after your previous dose, but booking an appointment around 6 months after your previous dose is preferable.
The COVID vaccine programme for those aged 75+
If you are 75+ or live in a care home you are being invited to have a Spring Booster vaccine. This will be offered around 6 months (182 days) after your booster vaccine, unless you are invited earlier.
The updated COVID vaccine programme
The NHS has produced a guide to the COVID vaccines so you can check your eligibility. Please click the link below to view.
What about those who’ve had COVID?
You still need to get a booster dose of the vaccine for extra protection, even if you have had COVID19. If you recently recovered from the virus, you will need to wait before getting any dose of the vaccine. You should wait:
- 4 weeks (28 days) for those aged 18 or over, or under 18 and considered to be in a high-risk group
- 12 weeks (84 days) for those aged under 18 and not considered to be in a high-risk group
How to get the COVID vaccine
You will usually be contacted by the NHS inviting you to book when your vaccination is due, but if you are immunosuppressed, you don’t have to wait to be contacted. There are three ways you can access your vaccination:
- Make an appointment through the national booking service
- Call 119 to book an appointment
- Find a walk-in site (not every walk-in site is able to offer vaccination for people who are immunosuppressed, so please use the NHS’ online finder to make sure you choose the right site for you)
When attending your vaccination appointment or visiting a walk-in site, ideally you should present relevant medical documentation confirming your condition. Something like a hospital letter which mentions your diagnosis or a copy of your prescription. If none of the evidence described is available, it may still be possible to get your jab – just speak to a clinician when you arrive for your appointment.
Living with COVID: Latest news and our response
On Monday 21 February 2022 the Prime Minister announced the plan for ‘living with COVID’ which effectively ends all restrictions in England.
We have summarised the key points from the announcement. You can also read our response and what we are doing to support people with axial SpA who are clinically vulnerable, including those who are immunosuppressed.
- From 21 February, the Government is removing the guidance for staff and students in most education and childcare settings to undertake twice weekly asymptomatic testing.
- From 1 April, the Government will no longer provide free universal symptomatic and asymptomatic testing for the general public in England.
- From 1 April, there will be some limited ongoing free testing:
- Limited symptomatic testing will be available for a small number of at-risk groups. The Government will set out further details on which groups will be eligible. The groups have not yet been decided.
- Free symptomatic testing will remain available to social care staff
- The legal requirement to self-isolate following a positive COVID-19 test will end on 24 February 2022.
- Positive cases will be advised to stay at home and avoid contact with other people for at least 5 full days and continue following this advice until they have received two negative test results on consecutive days.
- Household close contacts are advised to work from home if possible, avoid contact with high risk individuals and limit close contact with other people. Non-household contacts are advised to follow more general advice on ventilation, wearing masks and hygiene.
Access to antiviral drugs for those who are clinically extremely vulnerable including the immunosuppressed
- If the PANORAMIC study is successful then antiviral medication will be the first line of defence for those that are clinically vulnerable including those who are immunosuppressed. There is more information on the PANORAMIC study and how people who are vulnerable can access anti viral medication further down this page.
- It has not yet been decided how this process will work given that free testing will stop from 1 April. There is still a possibility that those who are immunosuppressed will be eligible for free testing.
- From 24 March, the COVID19 provisions within Statutory Sick Pay and Employment and Support Allowance regulations will end. People with COVID19 may still be eligible, subject to the normal conditions of entitlement.
- New working safely guidance is due to be available from 1 April. It will not require employers to take account of COVID in risk assessments.
The NASS position and actions
We know that this news has been extremely distressing for many of you, in particular those of you who have been shielding.
We are very concerned with the risk that the ending of restrictions will pose to those who are clinically vulnerable, as well as the equality implications of the removal of free testing. We are also concerned that immunosuppressed employees are not being taken into consideration with the new guidance for employers.
NASS will continue to work with other charities, including the Arthritis and Musculoskeletal Alliance (ARMA) who are representing us at government level, directly accessing Cabinet Ministers.
Scotland, Wales and Northern Ireland
Across Scotland, Wales and Northern Ireland some restrictions remain in place. Visit the following websites for more information:
Northern Ireland: Coronavirus (COVID-19): how to stay safe and help prevent the spread
Looking after yourself
Do consider the risks of close contact with others, particularly if you are clinically extremely vulnerable or not yet fully vaccinated, as the risk of catching or passing on COVID-19 is generally higher:
- in crowded spaces, where there are more people who might be infectious
- in enclosed indoor spaces where there is limited fresh air
- when COVID-19 disease levels are high in the general community
Extra precautions you might wish to consider, include:
- meeting outside if possible
- make sure the space is well ventilated if you meet inside
- consider continuing to practice social distancing if that feels right for you and your friends
- asking friends and family to take a lateral flow test before visiting you
- wear face coverings in crowded areas, such as public transport
- go shopping at quieter times of day
New treatments for COVID19
The latest treatments can help patients in the earliest stages of infection. These treatments must be used as soon as possible after symptoms start, following a positive COVID test.
Those people who are considered to be at the highest risk of COVID can access these treatments through the new NHS COVID Medicines Delivery Units (CMDU). A wider group will be able to join the national study for antiviral treatments called PANORAMIC.
How will I know if I can access these treatments?
You should have been informed by letter or email from NHS England if you are eligible. If you have received this letter, you should also have been sent a PCR test to keep at home.
If you develop symptoms of COVID-19 you should use this PCR test straight-away. This will ensure you receive a positive test result as quickly as possible. You can also take a rapid lateral flow test while you are waiting for your PCR test result or if you do not have a PCR test. You must report your COVID-19 rapid lateral flow test result on GOV.UK. This is so the NHS can contact you about treatment if you have tested positive for COVID-19.
If you haven’t had a letter but you believe you are at risk (e.g. you were asked to shield last winter) then do contact 119 for a PCR test. You may also need to phone your GP or consultant to ask for a referral.
What happens if you test positive for COVID-19?
If the NHS has written to you to let you know you are eligible and you get a positive test result, you will be called and a phone assessment carried out to decide which treatment option is most appropriate.
If you do not hear from the NHS within 24 hours of a positive test, and think you may be eligible, you will need to contact your GP practice or consultant for a referral.
For more information and updates please check the NHS webpage.
PANORAMIC national study for COVID-19 antivirals
The Government has also established a new national study for COVID-19 antiviral treatments called PANORAMIC. This study is run by the University of Oxford. To be eligible for this study you need to be:
- Aged 50+ or 18-49 with an underlying health condition
- Feel unwell with Covid-19 symptoms that started in the last five days
- Have a positive COVID test
You can sign up directly at www.panoramictrial.org or by calling freephone number 08081 560017.
Read more about the The PANORAMIC study.
Watch a video explaining more about the anti-viral treatments, monoclonal antibody treatments and the panoramic study.
The COVAX study
In February 2021, EULAR, the European Alliance of Associations for Rheumatology, launched COVAX. This is a doctor-reported registry to collect information about COVID vaccination in people with both inflammatory and non-inflammatory rheumatic and musculoskeletal diseases (RMDs).
Rheumatologists in EULAR-affiliated countries were asked to report as many cases as possible of people with RMDs who had received a COVID vaccine, whether or not they had experienced side effects.
From February to July 2021, information was collected for 5,121 people with different types of RMD who had received at least one dose of a COVID vaccine. The most common inflammatory RMDs were rheumatoid arthritis, axial spondyloarthritis, and psoriatic arthritis. The most common non-inflammatory RMDs were osteoarthritis and osteoporosis. Among people with inflammatory RMDs:
- 54% were taking a DMARD (e.g. methotrexate or sulphasalazine)
- 42% were on biologics (e.g. anti TNF)
- 35% were taking immunosuppressant medicines (e.g. steroids)
The results from COVAX show that the majority of people with inflammatory RMDs tolerate their COVID19 vaccine well – with no difference in safety profile to that seen in the general population or people with non-inflammatory RMDs. The most common side effects were short-lived reactions to the injection.
One of the reasons for asking additional safety questions in people with inflammatory RMDs is the concern that the vaccine could cause a disease flare. In this study, only 4.4% of people experienced a flare after having their COVID vaccine, and only 0.6% of the flares were classed as severe.
The majority of people (over 98%) were able to continue on their normal medication with no changes. The study also found there was a low rate of COVID-19 infections in people with RMDs once they were fully vaccinated.
The OCTAVE study
The OCTAVE study is a multi-centre, UK-wide trial. It is evaluating the immune responses following COVID-19 vaccination in clinically at-risk immunocompromised patients. For people with axial SpA that includes those on biologic therapies such as anti TNF and anti IL 17A.
The study is being led by the University of Glasgow and the University of Birmingham’s Cancer Research UK Clinical Trials Unit. OCTAVE is funded by UK Research and Innovation (UKRI).
The study used a range of tests performed on blood samples taken before and/or after COVID-19 vaccination in around 600 people across the UK including those with:
- inflammatory arthritis (rheumatoid arthritis, psoriatic arthritis and axial SpA)
- severe vasculitis (inflammation of blood vessels)
- diseases of the kidney or liver
- and who are having a stem cell transplant.
OCTAVE’s early data has been published. These initial results include 149 patients in the rheumatology group, with 119 with inflammatory arthritis taking TNF inhibitors and/or methotrexate but does not include people with axial SpA.
The results show that:
- 98% of the patients with inflammatory arthritis had a detectable antibody response in their blood following two doses of COVID vaccine.
- Antibody responses were lower than those seen in healthy people with 53% of people with inflammatory arthritis showing low responses.
It’s important to be aware that:
- The inflammatory arthritis group included included those rheumatoid arthritis and psoriatic arthritis on anti TNF and/or methotrexate but not people with a diagnosis of axial SpA. The larger OCTAVE group includes patients with axial SpA on anti TNF or IL-17A drugs, with results expected in the next few weeks.
- The significance of these findings in providing protection from exposure to COVID-19 is not currently known. There is no current agreed clinical cut off to measure COVID-19 vaccination response.
- Despite lower antibody responses (which are made by B cells) to the spike protein, all groups had good T cell responses to the spike protein, similar to those seen in healthy people.
The follow-on OCTAVE-DUO study has already started to determine whether a third booster vaccination will improve the immune response against COVID-19 for patients who have a low immune response after two doses.
If you’d like to read about how the study was run you can download a summary
OCTAVE-DUO Lay Trial summary v 1.0_10-Sep-2021
If you’d like to read the findings in more detail, we’ve included a link to The Lancet.
What research is being carried out into COVID19 and axial SpA?
In order to understand how COVID19 might impact on people living with rheumatological conditions like axial SpA (AS) a Global Rheumatology Alliance was established. Its aim is to increase our knowledge and understanding of how COVID19 both affects people with rheumatic conditions and if the medications people commonly take changes their risk. It is a database and clinicians from around the world are registering details of patients with rheumatic conditions who have contracted COVID19.
Can I help by taking part in any research?
We’ve put together a list of studies taking part around the world and here in the UK looking at the impact of COVID19. You can find out more here.