Frequently Asked Questions

 Last Updated: 25th March

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Update from CEO

As you will all appreciate this is a very confusing and anxious time for everyone and things are changing at a very rapid rate. This is why the information that was posted only a few days ago may have already changed as greater clarification becomes available.

I and my colleagues at NRAS are not medically trained and are relying on various governmental, scientific and clinical stakeholders to inform us of the latest developments and advice. There have been no protocols for this level of pandemic required in the past so Government, NHS, physicians and patient groups etc. are all learning and reacting as quickly as possible to a very fluid situation. This is perhaps why some of the information we shared previously may now be different and I cannot give any guarantees that it won’t change again over the next few weeks or even days.

For the above reasons, it is essential that the information we provide here should be read in general terms.  RA is a complex disease with equally complex treatments therefore it is impossible and inappropriate for any patient organisation to give individual medical advice, this must be given via those rheumatology health professionals who have access to your full medical history.

Thank you for your consideration of our hardworking helpline staff who are doing their very best to help you. Most people are very grateful for the help and support we are providing in these unprecedented times, however, a few are allowing their frustrations to impact our staff who are trying to help and dealing with double/triple the number of calls we normally get, so please can I request that everyone treats them and indeed all NHS staff with courtesy and respect during what is a very stressful time for everyone.

Wishing you all a safe passage through these turbulent times.

Are people with RA considered to be in the ‘vulnerable’ category referred to in the latest Government advice?

Yes - but there is now further clarification that has been issued from the British Society for Rheumatology as of 23rd March which will help distinguish between those at increased risk, high risk and very high risk.  It is more dependent on what medications some is on for their RA, how old they are and if they have any comorbidities. The following flow chart aims to clarify but everyone is different and their disease profiles will vary so NRAS cannot give a one-size fits all answer to this question.

- Are people on biologic/biosimilars/ advanced therapies at higher risk than those on conventional DMARDs?

(If you are not sure about the distinction between these types of medicines you can order for free our Medications in RA booklet [click here] or visit https://www.nras.org.uk/ra-medication)

It really depends as the chart shows if you are on mono-therapy biologic therapy or on combination therapy (e.g. adalimumab without also taking methotrexate) you will NOT be in the ‘sheilding’ group as considered at increased but not high risk. Whereas if you methotrexate, steroids and a biologic you would be at higher risk.)

BSR COVID-19 Risk Scoring Guide

- Should I stop taking my RA medications?

NO It is important to keep your RA as well controlled as possible. If you come off your medication(s) you have a very high likelihood of going into RA Flare. Due to the massive impact of this virus on the health service you would more than likely be unable to get to see your GP or rheumatology team for any sort of speedy intervention. You may be advised to pause your medications if you are showing symptoms of COVID19 but you should seek proper medical advice from speaking to 111 and ideally your rheumatology team.

- Is it the RA or the immune suppressing medications that heightens my risk?

This is a difficult question to answer because there is such a spectrum of expression of RA. But broadly speaking, RA does increase vulnerability and particularly if it is active. Most RA treatments are immunosuppressant,  some more than others depending on dosage. The chartS above should help clarify this and help you assess your level of risk  

- Where do I stand with my employer if I am designated as needing to self-isolate or be in the shielding group of people?

This is a difficult question and there is no easy answer as every employer will have different issues regarding their cash flows, sick policy etc. but there is some information for both employers and employees at https://www.gov.uk/government/publications/guidance-to-employers-and-businesses-about-covid-19/covid-19-guidance-for-employees

https://www.gov.uk/government/publications/guidance-to-employers-and-businesses-about-covid-19/guidance-for-employers-and-businesses-on-coronavirus-covid-19

This is changing all the time so it is best to get the most up to date information on the gov.uk website. However, as per Government directives issued Monday 25th March -  ALL workers should be where possible working from home or if the business is a non-essential and employees can’t work from home because of the nature of the business then on furlough. Key workers of course should be speaking with their line managers if they are concerned that continuing to work would put them or their colleagues or those they are interacting with in danger. 

- How will I get tested if I suspect I’ve got COVID19?

From Monday March 23rd the NHS is due to be communicating with people who are considered to be at high risk. You will be given specific advice about what to do if you are in the ‘sheilding’ category. NRAS has also been in communication with the NCVO who is in talks with the Department of Health regarding prioritising those at very high risk for testing if COVID19 is suspected. As soon as we know any more on this, we will post it here. 

- Will there be any disruptions to supplies of medicines?

There currently are no problems with supply chain as far as we know but we are in communication with the National Clinical Homecare Association and all pharmaceutical companies who will keep us updated if there any issues in the future. Below is a link for information on how home care services may be impacted.

https://www.clinicalhomecare.org

- There has been a lot of talk about anti-inflammatories online can you please clarify?

The European Medicine Agency (EMA) shared this information this week. The EMA is aware of reports, especially on social media, which raise questions about whether non-steroidal anti-inflammatory medicines (NSAIDs) such as ibuprofen could worsen coronavirus disease (COVID-19).

There is currently no scientific evidence establishing a link between ibuprofen and worsening of COVID‑19. EMA is monitoring the situation closely and will review any new information that becomes available on this issue in the context of the pandemic.

https://www.ema.europa.eu/en/news/ema-gives-advice-use-non-steroidal-anti-inflammatories-covid-19

- Should I continue to have monthly blood tests?

In some regions the rules are being relaxed on once every three to four months for blood testing. This will be safe for most people if their blood tests have been satisfactory up until now.

- How many patients on immunosuppressants have had severe disease or died from coronavirus globally?

This level of data is not yet available however there is a Global Registry that has just launched and NRAS urges people with RA and JIA to participate. The Global #Rheumatology Alliance needs to understand how coronavirus affects rheumatic, autoimmune and autoinflammatory diseases in Europe. If you are an adult or child with RA or JIA please  join the registry at www.jarproject.org/covid

- If I am self-isolating should my family be doing so also?

Only really if you are self-isolating because you have symptoms of COVID19. If you are self-isolating because you are in the high risk or very high-risk category then close family members should be taking extra precautions and practicing enhanced social distancing to keep you safe. If possible sleeping in a separate room, using separate bathroom facilities would be best but not always possible so following all the guidance for family as outlined in the government advice https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/ 

- I’ve heard that certain RA meds are being used to treat COVID19 in China is this true?

Two particular IL6 Inhibitors are being trialled in treating the virus but we have no data yet as to level of success.

As you imagine this past week has been incredibly challenging for NRAS in dealing with unprecedented number of enquiries and we are doing our very best to respond as quickly as is humanly possible. We are rapidly ramping up our resources and looking at alternative ways of supporting all those living with RA and JIA across the UK but we are also experiencing as is every other organisation, a drop in revenue due to fundraising events being postponed or cancelled.

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