NASS have advice and guidance on COVID-19 for people living with axial SpA (AS)
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 firstname.lastname@example.org.
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.
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.
The number of people in the community who were infected dropped because of the lockdown. The Government advised that shielding should be paused because the chances of you meeting a person who was infectious had dropped significantly.
Now that the virus infection rates are going up again, the government has produced new guidance on shielding. This time they are only advising people who are clinically extremely vulnerable to shield. You can read the government guidance for this group using the link below. There is an explanation of who would be regarded as clinically extremely vulnerable within this government information.
You will know if you are in the clinically extremely vulnerable group because you will receive 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 new National Restrictions from 5 November.
New restrictions were brought in for everyone in Northern Ireland from 16 October 2020. Shielding has been paused. Pausing, rather than stopping shielding is just a precaution and there are no plans for it to restart at the moment. The pause is indefinite, but it remains possible that the guidance will be reactivated if the risk increases in the future.
You can read a summary of the restrictions here.
The Scottish government paused shielding in August. This means that you can follow the same guidance as the rest of Scotland, taking into account the specific restrictions for local lockdown areas.
The Scottish Government have produced:
Wales is not currently under any additional restrictions. The same advice to distance, wash your hands and stay at home where possible also still applies, with no more than two households allowed to mix indoors.
The Welsh Government have paused shielding. If you were previously shielding, you should follow the guidance for extremely vulnerable group.
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.
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.
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.
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?
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.