Not to scare you but might make some feel a bit less scared.
From the NRAS coronavirus update
“From the evidence so far, there is no increased risk of catching coronavirus for those taking conventional DMARDs such as methotrexate, leflunomide, sulfasalazine or hydroxychloroquine. Rheumatology patients on steroids and biologics are likely to have a lowered immune resistance. It is possible that being on such treatments, may increase the chance of a more severe course of illness in people who do catch it”
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KittyJ
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Over the past 6-8 months I’ve had several operations which had meant I’ve virtually been off my biologics. This has been difficult, as you might imagine but right now, I’m feeling a little more than thankful, if this indeed is the case
That’s reassuring for some of you, but what about the rest of us on the biologics and steroids! Hoping there will be some more guidance and advice in the following days, especially for those us that are working . Yet again we are being told not to worry but it’s a perfectly , natural human reaction to worry when we need to work and carry on and care for potentially isolated elderly parents and not just ourselves to consider.
Oh yes..I know this..many of us in the same situation, a friend with severe MS has been told to carry on as normal and I absolutely will too but being sensible..My point has been all day though, is my work situation which puts me at an increased risk as I’m public facing..but hopefully more guidance will coming out this week. Thank you for updating us and I much rather still have the benefit of the big gun medication..than further joint damage. Keep well x
This wasn’t meant to make you decide to stop 😕 Please speak to your rheumy nurse again, they would tell you to stop if they thought you should 😊 Entirely your choice though of course.
Jean I also take Biologics and will not be stopping until told to. Please read nras.org.uk/news/coronaviru... which says continue with treatment as flaring is also a risk of catching the virus. Try to follow this advice and stay as well as possible
We understand that many people with RA or JIA and their families may be concerned at the Coronavirus pandemic described by the World Health Organisation as ‘a global public health emergency’.
Updated: Friday 13th March
Given the fast moving pace of government announcements regarding Coronavirus, we have updated our statement on Friday 13th March as follows:
It is completely understandable that people affected by autoimmune conditions like RA and JIA, whether they have the disease themselves or are a close family member of someone with inflammatory arthritis, are very concerned at the escalating pace of the impact of COVID-19 in the UK and the almost daily announcements coming from No. 10.
What is Coronavirus?
Coronaviruses are a common group of viruses known to infect both animals and humans. At the end of 2019 a new strain of coronavirus was identified as causing a cluster of pneumonia cases in Wuhan City, China. This has been referred to by various names including novel coronavirus, Wuhan coronavirus and SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2). It causes a respiratory illness known as COVID-19 that most frequently consists of mild symptoms of cough, fever and shortness of breath. In a minority of cases, COVID-19 can lead to serious problems like pneumonia or even death.
Key websites where you can get ‘official’ information
Please refer to the following organisations’ guidance for further information on the outbreak and how to protect yourself. Please note that the advice about what to do may vary between the devolved nations.
NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do: 111.nhs.uk/service/covid-19 (available in England, Scotland, Northern Ireland and Wales)
England: Public Health England has a blog on the virus which they are updating very regularly: publichealthmatters.blog.go...
Scotland: Health Protection Scotland are updating their website with the latest news daily: hps.scot.nhs.uk/a-to-z-of-t...
Edit: Further detail added in the below paragraph on 16th March
Are people with Rheumatoid Arthritis or children/young people/adults with Juvenile Idiopathic Arthritis at greater risk?
A number of medications used by people with the above conditions have the potential to change the immune system; these include steroids (prednisolone), DMARDs (methotrexate, leflunomide, sulphasalazine etc.) and biologics/biosimilars (etanercept, adalimumab etc.) and JAK inhibitors (tofacitinib, baricitinib). From the evidence so far, there is no increased risk of catching coronavirus for those taking conventional DMARDs such as methotrexate, leflunomide, sulphasalazine or hydroxychloroquine. However, the advice of the British Society for Rheumatology, our Chief Medical Advisor, Professor Peter Taylor, MA, PhD, FRCP, FRCPE, (Professor of Musculoskeletal Sciences, University of Oxford) and other expert rheumatology sources, is to continue with these medications. Rheumatology patients on steroids, biologics or JAK inhibitors are likely to have a lowered immune resistance. However, poorly controlled rheumatic disease can also lower resistance to infection and as well as causing all the complications of rheumatoid arthritis or Juvenile idiopathic arthritis. And it can be harmful to suddenly reduce the dose of steroid medication. Therefore, the advice of the expert rheumatology sources, is to continue with your medications unless otherwise directed by your healthcare team and take all sensible precautions to keep safe as in the section below, “What can I do to keep myself safe?”. If despite these measures, you should develop symptoms of infection, advice is given in the section below, “What to do if I feel unwell”.
What can I do to keep myself safe?
We recommend following the current government and Public Health England advice and taking precautions such as regular handwashing, covering your mouth and nose when coughing and sneezing, and avoiding close contact with people who are unwell. For those taking immunosuppression such as steroids, biologics/biosimilars or JAK inhibitors, we would suggest the extra precaution of avoiding crowded places such as public transport or large gatherings where possible. For people on these drugs, especially careful thought must be given to avoiding unnecessary travel or potential contact with infected individuals and observe all the current “preventative” measures including good hydration, adequate sleep and especially hand hygiene. There is no evidence that wearing a mask reduces the risk of transmission to unaffected individuals.
What to do if you feel unwell
If you have an underlying condition such as RA or JIA and feel unwell or notice any of the symptoms mentioned above, you should call NHS 111 and seek further advice on whether you need to be tested. If you are very unwell with fevers, as is the case with any infection, follow the practice you have been advised by your rheumatology team which would normally be to pause immunosuppressive therapy such as biologics/biosimilars or JAK inhibitors, except steroid, for the duration of the infection and until you feel well. It is very important not to stop steroids (prednisolone) abruptly as this could make you unwell. If possible, discuss details of your individual case with your GP or the Rheumatology team.
As per normal advice (with or without the threat of coronavirus), for people who are immunosuppressed, influenza and pneumococcal vaccines are recommended. If you have not had your annual flu vaccine we would recommend that you do so as soon as possible and this can be arranged via your GP or Pharmacist. People aged 65 and over only need a single pneumococcal vaccination. This vaccine is not given annually like the flu jab. People with a long-term health condition may need just a single one-off pneumococcal vaccination.
In the event that you have to travel, either here or abroad, keep up to date with the latest advice from your travel company, your travel insurance provider and the Foreign Office: gov.uk/foreign-travel-advice
Contacting NRAS
As you might imagine, our helpline is receiving a huge amount of calls at the moment and to ensure that you get the information you need from us quickly, here are some tips:
People who don’t have symptoms of the virus, haven’t come into contact with anyone and are otherwise well (apart from their RA/JIA) can get their questions answered by reading the information in this bulletin on our website and on the other official sources of government information listed here. We suggest they follow the information in this bulletin and take the same precautions as the general public and don’t need to stop taking their medications.
Anyone who believes they have the virus or may have been in contact with someone who has the virus should follow the advice above, under ‘What do if you feel unwell).
So sorry to hear you’re worrying Jean I am too. But it clearly says keep taking medication unless told not to. Personally I am going to continue on. I hope you stay well
Thank you kindly for the information, I’ve had RA for 8 years and take methotrexate and biologically and been stable for 6 years now, I will also continue taking my meds until told otherwise. Hopefully more info will follow and the experts are researching as we speak.
I agree with Kitty ..hopefully there will be some more guidance for us all in the coming days on what to do for the best, as we shouldn’t stop our medication unless advised too . keep well..x
This is what Versus Arthritis have to say: “The current advice is that you should not stop taking your medications unless advised to do so by your rheumatologist or rheumatology nurse.
By stopping your medication, you're more likely to have a ‘flare’, which could make you more likely to pick up an infection.
If you have concerns about your medication, speak to a member of your healthcare team.”
Hi Jean,i ve also stopped my medication and cancelled all my appointments with the doctors.i m also trying to keep a possible flare away.i know my immune system is very weak and try to isolate my self from ill people.us ,as pacients,we have to do our own researches on this virus and follow our own instincts when it comes to our safety.hope we will all make it safe through this hard times,may God be with us!
Well everybody says don t stop ur medication unless u get the Coronavirus...I don t want to wait for that!i know the Mtx together with the biological lower my immune system so ...wait for what???
That is true , but when u know the consequences...u better act. I don t a understand why are they trying to get us all infected? Just to decrease our number???
You really must take advice from your rheumy...just think back to how bad you felt before you found a drug to help your pain.
With this disease we often have to take a leap of faith......with NHS staff being so thin on the ground....if you do relapse without your drugs...there is no guarantee you will be able to re-start quickly...your nurse is highly qualified & knows what she is talking about.
I haven’t been able to contact ra nurse so didn’t have it yesterday but have been given a week to think about it ( by community nurse )
I have isolated myself but my daughter lives with me and her work means shes with lots of people ( probation officer )) so it worries me , thanks for your advice though 🌸🌸
If you dont take your drugs you will flare, that can cause kidney disease heart disease eye sight loss to name a few. Those conditions in turn make you more vulnerable. If u get the virus and needed ventilating for example being in a flare will only hamper you getting well and treatment. The medical advice is there for a reason if they thought it would help us not to get treated theh would stop it today and save billions of pounds.
And after a few days/ weeks you will be begging for your drugs.....
So sorry you cannot see thus everyone else please take your meds unless told by nurse or rheumy, eg normal conditions stop it if you get sick with any virus, bacteria etc.
Thx for the advices,the thing is that I was bad also with the medication.infiltrations,monthly shits don t help me.besides or on top of all I have a really severe iron deficiency.i can t take any kind of iron tho,I m alergic...
It is your choice but think back to how bad you felt without your RA drugs...if you can face that....don’t blame your rheumy if you can’t go back on them at the drop of a hat.
Those of us on infusions have no choice except to refuse the next infusion.
I will be having my infusion because this virus is going to hang around for a long time , and I am certainly not chancing going back to being how I was before my Biologic drug gave me my life back.
When I started on biologics I deliberately chose Enbrel over others as it’s half-life is the shortest. 3 days I think. So I’m not going to worry about it unless I have symptoms.
I’m similar to you helix, on benepali, biosimilar for enbrel, and was told at recent rheumatology drugs update that it’s out of your system in 1-5 days, so hope that reassures some. I would obviously stop it with any infection as per medical advice. This has only happened once in well over a year of taking it. I was fine when I went back on. Take care all xxx
Pretty sure I have this coronavirus as have the massively dry cough and fever since Saturday now. It ain’t that bad guys! Throat feels horrible and it’s bit sweaty but have honestly had worse hangovers in the past! Everyone will catch it at some point so best to just get it early and get it out of the way and enjoy the rest of the year. Yes some may die and others won’t. Same can be said about peanuts, bee stings, hay fever and hunger though right 😂
Work only offers SSP if you phone in sick so no self isolation for me 😂 I am here coughing and spluttering so let’s see how contagious this garbage really is eh
Nah if I had phoned in sick I would have got SSP... they sent me home which means I get full pay. Can’t afford to be off work and only get SSP hence the reason I went in. But ya after an hour they sent me home 😂 we all gonna catch it at some point anyway so Just let it happen in my opinion. Been on Humira for a good 10 years or more though and see a lot of questions about corona and biologics... guess I will be able to tell you in a few days if it gets bad etc... I am only 34 though and understand it is supposed to be worse with age so I may not be the best guinea pig! Due another injection in a couple of days though so will let you know if it makes it worse
It's behaviour like yours that create the pandemic and hence kill people, most probably not with intention. But by being careless and not accepting that advice is put out to protect vulnerable people from others less vulnerable.
Haha well I believe the planet is overpopulated so a little pandemic here and there ain’t going to hurt! The year 1800 there was 2.8 billion people on the planet. Around that same time they discovered penicillin and 220 years later the population is closer to 8 billion. Kinda funny how the thing that might kill a bunch of people can’t be cured with antibiotics. A certain amount of irony don’t ya think 😂
I joined last year when my meds randomly got changed and ya I got pretty depressed and suicidal because of it I guess but am all good now after anti depressants and therapy etc. Rarely check my emails but did at the weekend and saw a whole lot of things about Covid 19... I have a very different sense of humour it would appear 😂 I learnt to laugh at death and see it as inevitable. I find it weird how 1000s of years ago most who were alive spent there lives preparing for death. In today’s world we have a planet full of individuals who spent there lives doing anything and everything they can to avoid it! I find this odd!
Don’t really get this tbh... I just sitting here trying to move my mouth over to the side of my face little Nicky style and then laugh.... feel a bit like Popeye 😂
I would question this info with our doctors tbh everywhere else it says metho lowers the system it is a new virus no one knows how it affects us.. Stay safe lovelies maybe they wrote it down wrong should we call them and question it?
NRAS is a reputable site for information. They’re not saying mtx doesn’t affect your immune system but that from evidence so far there is no increased risk of catching coronavirus. I doubt they wrote it down wrong 😊
Yes I am aware they are one of the trusted sites...but it looks to me as like others that it's saying its just steroids and bio treatment that lowers the system. What ever it says tbh it's a horrid situation and a nightmare for health professionals
Which of my previous posts are you talking about? I haven’t posted on Coronavirus before.
I’m not disagreeing anywhere in this post that those drugs affect the immune system. We all know they do. It’s not about that it’s about the increased risk of catching coronavirus or not depending on which meds you are on.
It will have been checked by clinicians before publication.....unless you are presenting with the very well quoted symptoms of Covid19 ....don’t get stressed.
I don't think anyone is of the opinion that we would have an increased risk of catching it but, as your author confirmed, we do know that it's effects could be very serious to deadly. Unfortunately, we wouldn't know who might be contagious if there are people with none to mild symptoms.
I wouldn't stop my meds without first talking to my medical staff. I'm more worried about the effects of it if caught and so am taking the most precautions I can not to catch it in the first place.
I am off sick since Wednesday, mostly with a very bad cold and the worst headache , I also have cough and kept feeling hot and cold. Been drinking lots of hot lemon and paracetamol. Starting to feel better today, I don’t know if I just have a bug but I am still taking my Tocilizumab as I do not want my Ra flaring up as well.
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