Frequently Asked Questions
Last Updated: 28th April
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 24th March which will help distinguish between those at increased risk, high risk and very high risk. It is more dependent on what medications someone is on for their RA, how old they are and if they have any comorbidities (other health conditions). The chart below issued by the British Society for Rheumatology aims to clarify and aid in deciding what level of risk someone with RA may be at. Everyone is different and their disease profiles will vary so there is no one-size fits all answer to this question. Your own rheumatology department will be assessing their patients and it will be your own rheumatology department who will have already or be planning to send out ‘shielding’ letters.
- Are people on biologic/biosimilars/ advanced therapies at higher risk than those on conventional DMARDs?
It really depends if you are on mono-therapy biologic therapy or on combination therapy.Mono-therapy would be a biologic e.g. adalimumab without also taking methotrexate whereas combination is with another medication e.g. methotrexate. If you are on monotherapy and have no other underlying conditions or on high dose steroids you will NOT be in the 'shielding' group. Please take a look at the scoring criteria in the chart above published by the British Society for Rheumatology which will give you an indication as where you are on the 'risk' levels. Your rheumatology departments will be contacting all those in the 'shielding' category. Please note the BSR has issued this guidance but it is not mandatory and it will be up to your treating physicians who know your circumstances best to make that final decision.
- Should I stop taking my RA medications?
NO It is vitally 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. Again why it is so important to keep your RA as under control as possible by adhering to taking your medications AS prescribed. Most RA treatments are immunosuppressant, some more than others depending on dosage. The BSR scoring chart above should help clarify this and help you assess your level of risk.
- 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.
- 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.
- Should I continue to have monthly blood tests?
In some regions the rules are being relaxed to once every three to four months for blood testing instead of monthly. This will be safe for most people if their blood tests have been satisfactory up until now. Your own rheumatology unit will probably be updating you via their own websites or text messaging services. If you are unsure do try to speak with your nurse helpline if possible.
- 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.
There is also lots of other COVID19 research and data gathering happening very rapidly to find out more read the latest updates on research[click to new section]
- If I am self-isolating should my family be doing so also?
Your immediate family/those you live with only really need to self-isolate if you have symptoms of COVID19. The person with symptoms should self isolate for 7 days and those in direct contact for 14 days. 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 is this true?
Two particular IL6 Inhibitors as is hydroxycholoroquine are in clinical trials for treating the virus but we have no data yet as to level of success. Other medicines that have been used in the past to treat EBOLA and SARS are also in clinic trials.
As you imagine these past few weeks have 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. If you can help, please consider donating to NRAS. Thank you.