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COVID19 / Coronavirus

NASS have advice and guidance on COVID-19 for people living with axial SpA (AS)

Updated 26 January 2021

Since the start of the COVID19 pandemic NASS has carefully monitored the situation for people living with axial SpA (AS). 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 asknass@nass.co.uk.

Vaccine

This section gives information about the COVID-19 vaccines which have been approved for use in the UK. Two vaccines have been approved so far. The Pfizer/BioNTech vaccine and the Oxford Astra Zeneca vaccine.

Our information will be updated regularly over the coming weeks and months as new information about this vaccine and others that have been developed becomes available. Please check back frequently. Dr Antoni Chan, Consultant Rheumatologist at the Royal Berkshire NHS Foundation Trust has produced more detailed information on the COVID-19 Vaccines which you may find interesting to read. 

How do the vaccines work?

Pfizer/BioNTech have produced an mRNA vaccine. It is not made up of any part of the COVID-19 pathogen (live or dead). Instead, the vaccine contains the genetic code for the COVID19 spike protein. This works to ready the human body to prepare and defend against the COVID-19 virus through the production of T-cells and antibodies. RNA is not integrated into the DNA. Once it has been delivered it disappears from the body.

The Oxford Astra Zeneca vaccine is a chimpanzee adenovirus vaccine vector. This is a harmless, weakened adenovirus that usually causes the common cold in chimpanzees. It was chosen as the most suitable vaccine technology for this vaccine as it has been shown to generate a strong immune response from one dose in other vaccines. It has been genetically changed so that it is impossible for it to grow in humans. This also makes it safer to give to children, the elderly and anyone with a pre-existing condition. Chimpanzee adenoviral vectors are a very well-studied vaccine type, having been used safely in thousands of subjects. The Oxford Astra Zeneca vaccine contains the genetic sequence of the COVID-19 surface spike protein. When the vaccine enters cells inside the body, it uses this genetic code to produce the surface spike protein of the coronavirus. This induces an immune response, priming the immune system to attack the coronavirus if it later infects the body.

What happened in the clinical trials?

Full phase 1, 2 and 3 clinical trials were carried out for both vaccines. The data from the clinical trials has been assessed by the MHRA.

For the Pfizer/BioNTech vaccine there were 150 trial sites across 6 countries. The clinical trials involved 44,000 people. 22,000 received the vaccine and 22,000 a placebo. Those who took part in the trials will be monitored over the next 2 years. They included people with stable HIV and stable Hep B and C. Additionally 50% had at least one pre-existing medical condition but detailed analysis has not taken place on these patients.

For the Oxford Astra Zeneca vaccine the phase I trial in healthy adult volunteers began in April 2020. More than 1,000 immunisations were given in the UK. The phase 2 trials expanded the age range of people the vaccine is assessed in, to include a small number of older adults and children. Researchers will be assessing the immune response to the vaccine in people of different ages, to find out if there is variation in how well the immune system responds in older people or children. The results of the Phase I/II trial were published in July 2020. Phase 3 trials assessed how the vaccine works in a large number of people over the age of 18 in multiple locations. Initial Phase III results were published in December 2020.

What do we know about the effectiveness?

The level of effectiveness for both vaccines was consistent across age, race and ethnicity. The level of effectiveness for the Pfizer /BioNtech vaccine in adults aged 65+ stands at 94% while the known effectiveness for the Oxford Astra Zeneca vaccine is 70.4%.

And what about safety?

The trials for both vaccines was monitored for safety by an independent data monitoring committee. Since the UK vaccine programme started, two people with a history of severe allergy had allergic reactions to the Pfizer /BioNTech vaccine and these cases are being investigated. People with a history of severe allergy will not been given the vaccine at present.

For the Oxford Astra Zeneca vaccine the MHRA have advised that people with a known history of allergy to the ingredients in the vaccine should not receive a vaccination, but people with known food allergies are able to receive this vaccine.

Will the vaccine be suitable for me?

People with autoimmune conditions were included in the trial of the Pfizer / BioNTech vaccine if their condition had been stable for 6 weeks before. There was no obvious difference in their response to the vaccine. Further analysis of the data is planned to see what more can be learned.

While there was no data gathered in the trials on immunocompromised patients, because it is an mRNA vaccine the MHRA are satisfied it is safe to use in people whose immune system may be low. This includes anyone on DMARDs such as methotrexate, steroids and people on biologic medications like anti TNF and anti IL17A.

Although the Oxford AstraZeneca vaccine is made of a real virus, it has been inactivated so it can’t cause a serious infection, even in someone whose immune system has been suppressed. This means that it’s safe for people who are on medicines to suppress the immune system.

People on drugs that suppress the immune system are on the priority list for vaccination that has been produced by the Joint Committee on Vaccination and Immunisation (JCVI).

It’s important to note that if your immune system is low, the level of effectiveness of the vaccine might be reduced. This is because your immune system may not work as well to produce al the T-cells and antigens a healthy person would.

If you are pregnant you should not take the vaccine.

If you have had COVID19 you are still recommended to have the vaccine.

Will one vaccine more suitable than another for me?

We don’t yet know if one type of vaccine is more suitable than another for people who are on medicines to suppress the immune system. It may take many months of further research to determine this. If you’re offered the vaccine and delay taking it, then you leave yourself at risk from COVID-19.

Should I stop my medication when I have the vaccine?

There is currently no evidence available to make a recommendation.

What if I’m just about to start a biologic medication?

The advice in the Green Book, the official guide for healthcare professionals on vaccination, has been updated. It now advises that anyone who is about to start immunosuppressive therapy such as anti TNF, anti IL 17A  or DMARDS, should be considered for COVID19 vaccination before starting. They ideally recommend receiving the vaccine 2 weeks before starting the new therapy.

They add that it would be better to have both doses before starting to provide maximum benefit.

When might I be offered the vaccine?

The NHS has started the COVID19 vaccination programme. You can read more about The Joint Committee on Vaccination and Immunisation (JCVI) advice on this issue. Their 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.

Am I at more risk from COVID19 because I have axial SpA (AS)?

If you have a forward stoop (kyphosis) and / or a reduced ability to expand your chest and ribcage you could be at greater risk if you contract COVID19. It’s possible you may also be at greater risk if you take medication that suppresses the immune system such as anti TNF therapy, IL-17A inhibitors, DMARDs (most notably methotrexate) and steroids (10mg or more per day). Take advice from your own rheumatology team on your level of risk. Do not stop taking any medication without advice from your rheumatology team.

Making decisions about shielding

Each of the devolved nations has its own approach to handling the COVID-19 crisis.

England

Just over 2 million people in England were advised earlier this year that they needed to shield because they are extremely vulnerable to the covid-19 virus. Shielding aimed to ensure that you did not come into contact with the virus and therefore would not become ill.

This advice changed in the autumn to cover only the clinically extremely vulnerable. You will know if you are in this group because you will have received a letter from the NHS telling you that you fall into this category. If you think there are good reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP.

If you have not been informed that you are clinically extremely vulnerable and have not been informed that you are on the Shielded patients list, follow the government guidance for your local area,

The government updated guidance for the clinically extremely vulnerable in December.

Northern Ireland

Lockdown restrictions are in place in Northern Ireland. Read a summary of these restrictions.

Scotland

From 5 January, mainland Scotland will be in temporary lockdown. Some islands will remain in tier 3.

For the latest information on what you can and cannot do, check the guidance on Gov Scot website.

The Scottish government is recommending that the clinically vulnerable follow the guidance for clinically extremely vulnerable to help protect yourself and others. For more details on the risk groups and protection levels, read the Gov Scot website information on the highest risk group.

Wales

All of Wales is currently in alert level 4. Read the latest guidance on what this means for you the Gov Wales website.

The advice to those who are clinically extremely vulnerable, previously ‘shielding’ is that those in this group should no longer attend work or spend time outside of home unless for exercise or to attend a medical appointment. You will receive a letter in the new year to confirm this advice. It is recommended that you should follow the guidance for extremely vulnerable people.

Advice on shielding including employment

This guide from ARMA provides advice on tips on staying safe and should help you make the right decisions on going outside.

Making decisions about shielding November 2020

This guide also from ARMA gives information on shielding for those who are in employment or education, including what your employer must do and also what additional actions they can take, such as the option to furlough you if you have been advised to shield.

Employment and education advice

Should I continue to have my blood tests if I am on biologics or DMARDS?

Current guidelines by the British Society for Rheumatology state that people on biologics should have their blood tested every six months, and those on DMARDs should have blood tests every three to four months. Your blood tests are important and you should attend any appointments as normal. Clinics have taken many precautions to ensure a safe environment.

Will the delivery of my biologics be affected?

The short answer to this is no and the National Clinical Healthcare Association (NCHA) have put together a handy list of Frequently Asked Questions (FAQs) to help.

NCHA FAQs

Will I see my rheumatologist and physiotherapist as usual?

There may be delays to planned appointments as staff in rheumatology departments were redeployed during COVID19. To keep everyone safe, a lot of appointments are being carried out over the phone or online. NASS has produced a short video to help you make the most of remote appointments.

When will my NASS branch get started again?

A lot of our NASS branches have moved to offering online sessions so you can exercise safely from your home. These session are led by physiotherapists and still enable you to have a chat with others living with axial SpA (AS). You can find your local NASS branch by putting your postcode in the search box on this page.

How can I safely exercise?

NASS have a whole range of exercise resources for you and we’ve been working with physiotherapists, yoga teachers and Pilates teachers to put together some short stretch sessions you can use.

What research is being carried out into COVID19 and axial SpA (AS)?

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.

Research papers are already being produced based on the results. One paper based on over 600 patients from 40 different countries indicated only those taking more than 10mg of oral steroids were at greater risk of being hospitalised for COVID19. No other drugs increased the risk of hospitalisation and anti TNF appeared to decrease the risk.

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.

Looking after your emotional wellbeing

It’s important to look after your emotional wellbeing. Visit our wellbeing page for advice and support, including specific advice for managing anxiety.