NRAS Corona Virus Advice: Can anyone please enlighten... - NRAS

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NRAS Corona Virus Advice

Jimminey profile image
40 Replies

Can anyone please enlighten me on the NRAS advice where it says '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.'

I would have thought that the risk of catching the virus depends upon what exposure you have had to it, in other words the number of human contacts you have had. But surely the big question is, 'how the does the suppressed immune system (as a result of taking DMARDS) respond to the virus if it is caught?'

I want to know if, as a result of taking DMARDS (methotrexate 20mg weekly; sulfasalazine 1500mg twice daily), the effect of Covid-19 is likely to be serious and so then decide whether I should go into a crowded supermarket to buy groceries or ask others to pick them up for me.

Any advice will be gratefully received.

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Jimminey profile image
Jimminey
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40 Replies
lilyak profile image
lilyak

Your risk of *catching* COVID-19 is the same as everyone else's. As you say, you can reduce your risk by self isolating.

BUT if you catch it, you are more likely to have a severe disease course, because you are immune suppressed. All dmards suppress your immune system, but its believed that biologics and higher doses of prednisone have the greatest effect, i,e, put you at highest risk (than say methotrexate alone). But any immune suppressants means COVID-19 is a more serious risk for you.

If I were you, I would not be going to a crowded grocery store, I'd take advantage of home delivery. Stay safe.

Best,

Lily

Brushwork profile image
Brushwork in reply tolilyak

Home delivery! I wish, unless it’s changed since Tuesday

lilyak profile image
lilyak in reply toBrushwork

Oh I'm sorry, I just re-read your post. Yes, if you can get someone else to go for you, that would be much safer for you.

helixhelix profile image
helixhelix in reply tolilyak

I’m wondering whether our risk of catching the disease is actually the same as everyone else....? Normally if your body comes into contact with a virus it responds rapidly, and if the virus gets into your blood stream it mounts a defence via antibodies and T cells. Generally coming into contact with a virus doesn’t mean you automatically get the disease as many times your body will suppress the virus before the infection establishes itself - and probably before we even notice.

Our bodies may not do that as well, so perhaps there is a greater risk that an exposure to a virus will result in an infection.

However it is individual, as I know that despite taking MTX and a biologic my immune system is functioning at a reasonable level. I haven’t had a cold or cough despite other around me getting them, I don’t get infections like UTIs, and when I injure myself the cut or scratch heals normally. So I’m not worrying over much.

lilyak profile image
lilyak in reply tohelixhelix

Yes. You just said it. If we come into contact with the virus, we will have a more severe course.

Our risk of catching it depends on our behaviour.

If you're not worried, that's good. The advice is still to self isolate.

In Australia idiots were hanging out on Bondi beach, because they don't see a problem. THEY know they're fine. But its not about you. Its about the virus and protecting all of us.

The only way to flatten the curve is to isolate. this isn't about protecting the individual, its about protecting society. The advice is everywhere.

helixhelix profile image
helixhelix in reply tolilyak

I was responding to your sentence

“Your risk of *catching* COVID-19 is the same as everyone else's.”

And merely questioning whether this was true...

And of course it’s about society not the individual. By saying that I was not worried I meant I was not (that) worried that the virus would kill me. I was not saying that I was not bothering to follow advice.

AgedCrone profile image
AgedCrone in reply tohelixhelix

Our risk of actually contracting CV19 is the same as anyone else ....the question is how we will react to having it.....ie deal with it & carry on as have many non Dm/Bio people, or not deal with it well, & become very poorly.

I am elderly & on Biologics...I very rarely have colds & don’t seem to pick up bugs easily....& I don’t get winter chest infections....whereas I have friends of similar age...on no drugs at all who seem to catch every bug going & get bronchitis every winter.

I am aware I am at risk & I will take sensible care, but I have no intention of ordering any special clothing to wear when I go outside.

I will stay on my normal diet, will keep occupied, & try to take a little walk each day,

I don’t think you can generalise...it must depend on the individual ...although of course it is known that being on the drugs we take does increase the likelihood of a more serious infection........in some.

in reply tolilyak

Today the local paper showed massive queues for the local big Tesco. My carer's informed me this was for the NHS shopping hour and they've been shoving together in the store and queuing. If clinical staff don't take precautions what hope for the rest of us? Not that I didn't think an admission to my local hospital wasn't a death sentence anyway. They really are appalling.

Epworthgirl profile image
Epworthgirl

This is the latest advice from NRAS

Last Updated: 20th March

- Are people with rheumatoid arthritis (RA) considered to be in the 'vulnerable' category referred to in the latest Government advice?

Yes, meaning you should be from this weekend self–isolating as instructed by the Prime Minister on Monday 16th March. (see later explanation of social distancing/self-isolating/quarantine)

Unequivocal statement

Hope this helps

Brushwork profile image
Brushwork in reply toEpworthgirl

I thought we were social distancing not self isolating - where is this information that advises ‘self-isolation.?

Epworthgirl profile image
Epworthgirl in reply toBrushwork

On the NRAS website which was issued on Friday

Brushwork profile image
Brushwork in reply toEpworthgirl

That is interesting because Gov uk are still saying social distancing for vulnerable people. If it is not clear to someone who reads everything, everyday - then there is a problem.

helixhelix profile image
helixhelix in reply toBrushwork

If you look to the right of the screen there is a section called “pinned posts”, and the latest advice is there..

Brushwork profile image
Brushwork in reply tohelixhelix

Yes thanks. I’ve seen it. My point is that the Gov UK advice is different.

helixhelix profile image
helixhelix in reply toBrushwork

NRAS advice reads “The government stated earlier in the week that they will be asking those in the ‘high risk’ groups to self-isolate from this weekend, so if you meet that criteria in the above link you would be asked to and some with RA have already started to self-isolate as a precaution.”

lilyak profile image
lilyak in reply toEpworthgirl

Hi Epworthgirl, I Just got a notification from you saying I'm wrong. I can't see the post here. I mean no offence, I would like to see the post? If my information is wrong, I would like to know, do not want to be spreading bad information, especially at this time.

Epworthgirl profile image
Epworthgirl in reply tolilyak

Hi there, I deleted the post. I thought your first statement was incorrect, I still do but the rest of your post was in my opinion correct. We do have a greater vulnerability and a greater susceptibility because some or all of the drugs we take are immunosuppressive so we are more likely to catch things. I think in retrospect I should have left it up but didn’t want to be contentious. The excerpt I actually posted clarifies our position anyway.

Best wishes, Teresa

lilyak profile image
lilyak in reply toEpworthgirl

Please expand your research. Listen to the medical people on the front line. Please be safe. For yourself, and for others. Whats' the worst that can happen if you play it safe? now contrast that with whats the worst that can happen if you catch the virus. Across the world, doctors, virologists, influencers are asking people to stay home.

Please stay home. Its that simple.

Epworthgirl profile image
Epworthgirl in reply tolilyak

I don’t understand what you mean. I was the one who posted the info from the NRAS about being classed in the vulnerable group so I'm very aware of what I should be doing and am listening constantly to what the medical people are saying, which was why I posted what I did in reply to your post.

Best wishes, Teresa

lilyak profile image
lilyak in reply toEpworthgirl

That’s good. I’m glad you get it. This is for everyone. Did you see what happened in China? How did they stop it. Iran? Italy? Do you know which countries are beating the spread? Do you know how they are doing it?

This is not about the UK and your personal risk profile. Very soon everyone will be given the same advice. Stay at home. Take a look around. At the world. Millions in lockdown. Then extrapolate.

We need to flatten the curve. That’s the only way to save lives. And that means staying at home. Isolating. Big picture. World picture. Not just the NHS.

Obviously we are high risk individuals. It’s not end. A point of contention. But it’s gone we’ll past that now. Doctors and nurses are risking their lives. Have you seen their campaign? They go to work so we need to stay home. Just think about it.

Epworthgirl profile image
Epworthgirl in reply tolilyak

Really I’ve always got it, I’ve been self isolating for a fortnight now I'm glad you understand the seriousness of it.

Paulineg profile image
Paulineg

Hi Jimminey. I am on the meds you mentioned plus benopalin. I had an appointment with my rheumatologist last week and he told me to carry on taking everything unless I get any symptoms. He told me to avoid crowds and therefore my daughter has banned me from going out and she is getting all my shopping. I think it would be a good idea if you can get someone to get your shopping for you as the less chance you have from mixing with people can only be good. Anyway just take care

Buckybri profile image
Buckybri

My Rhumotiliy nurse phoned me the other day and told me I’m high risk but follow government guidelines, which is confusing because if I’m to catch the virus then I may become seriously ill ( and we have seen what this can do to people ) so they kind of want me to go to work but be careful, well how do I do that ? I work among 1200 people in a building . So there was no way I was going to work , I told her of my concerns and she said that a letter was going out from Monday but she wouldn’t tell me what it said , so I’m thinking that it’s to tell us all at high risk to stay home . Hope so because then I would of thought I could then claim the sick pay that they have promised because at the moment you can only get a sick note if u have or think u have the virus .

Buckybri profile image
Buckybri

Yea that’s what I thought as everyone would be staying at home and getting paid

AgedCrone profile image
AgedCrone

How about we just all use our own common sense.? There is enough advice being distributed & it is our duty to read it.

If we don’t start making a strong effort....we could end up like Italy in a few weeks time ....& nobody wants that.

We all know how we each individually cope with infections, how many infections we get how , how many need treatment.....& how easily we fight off infection .......it must be down to each individual to seriously consider their own situation.

Obviously distancing from likely infection is sensible...but the letters being sent out cannot possibly give individual advice to every single recipient...so please read all the available information...if you are reading this you have access to the internet ...it’s all online.

AgedCrone profile image
AgedCrone

We must stop being like a rabbits caught in the headlights and think for ourselves. ....stay home, eat well, talk to friends on the phone, check websites. ....keep occupied.

Some countries are coming through this Pandemic.......let’s make sure the UK is one of them.

As I understand it, RA is the result of an overactive immune system. Taking DMARDs reduces our immune responses and, at the relatively low doses we take, probably just resets them to around normal levels.

I've been taking MTX for a year and haven't had a great increase in infections. I just had a minor chest infection in the autumn, but I'd been taking a low dose of Prednisolone for six months and I understand that steroids make us more prone to infections. I'm extremely glad I'm off steroids now.

Regarding crowded supermarkets, it's best to avoid them if possible. Small shops often have stocks of things that have run out in supermarkets. Our Sainsbury's Local keeps goods for "the elderly" (and presumably other vulnerable people) in the warehouse. You just ask for what you want.

If other people are going shopping and are willing to get things for you, that would be a great help, too. I wouldn't like to ask anyone to go specially. It's a risk for them too.

Take care and you will almost certainly be all right. I send you my best wishes.

Jimminey profile image
Jimminey in reply to

Thank you very much for your reply and advice Bacharia, and all of you.

I have been enjoying a good kip, as recommended for the immune system, and so have only just surfaced to find so many responses.

There seems to be be some controversy over whether RA is the result of an overactive immune system or the immune system misdirecting its attention, as it were. Since starting taking the DMARDS 15 months ago (I am 64) I have had 3 serious bouts of food poisoning (vomiting and diarrhoea) and 6 minor which my GP has put down to the suppression of my immune system.

So do I risk possibly crowded shops or ask a friend or neighbour to go for me (which I am reluctant to do as it puts them at greater risk)?

Do you know if the slots some shops have recommended for vulnerable people - such as the 9am to 10am (Mon, Wed & Fri) slot at Tescos - are any more or less crowded than usual?

Just to get some food inside aswell as a good forty winks would seem to be a fair basis for seeing this out.

in reply toJimminey

Sorry to hear about the food poisoning. Does your consultant think it was caused by the MTX?

I think if your friends collect some food for you while doing their own shopping, they will not be at much greater risk, but making extra trips to the shops would expose them to more people.

Jimminey profile image
Jimminey in reply to

I asked the rheumy about the food poisoning who told me to see my GP who said it was almost certainly the DMARDS. 2 of the severe cases were when I was just on sulfasalazine. This makes sense as I only had 2 bad cases in the previous 63 years.

Thank you for your advice on the shopping - it will make it easier to ask if the shops are too crowded.

KittyJ profile image
KittyJ in reply toJimminey

How do DMARDs cause food poisoning, surely it’s the food that was the problem ?

Jimminey profile image
Jimminey in reply toKittyJ

Yes, I suppose it was primarily the food, but the suppressed immune system presumably allowed it to affect me whereas it didn't affect others.

in reply toJimminey

Just from what I've read, it would seem the SSZ is more of a culprit.

I hope you get the shopping sorted. It goes against the grain to be asking people to do these things for us, but with no family nearby we'll soon have to.

Look after yourself.

Jimminey profile image
Jimminey in reply to

Indeed, I have no family nearby as presumably yourself.

Interesting about the SSZ as the NHS guide to clinicians about Coronavirus notes it as more risky in that respect than MTX.

Look after yourself too.

Jimminey profile image
Jimminey in reply to

Sorry, I meant to write:

'Interesting about the SSZ as the NHS guide to clinicians about Coronavirus notes MTX as more risky in that respect than SSZ.

I must stop worrying and concentrate...!

AgedCrone profile image
AgedCrone

If anybody knew that Jimminey...I guess they would get the Nobel Prize!

But for the information look on the NRAS website.

Everybody has a different range of immunity....until you have been on Dmards & it is seen how many side effects/infections you pick up it’s kind of a lottery.

I’m sure there are tables/graphs showing examples...but how an individual fits those graphs is not immediately obvious,

For what it’s worth the prevailing information appears to be to stay away from crowded supermarkets

Jimminey profile image
Jimminey in reply toAgedCrone

Yes, it would be good if a Nobel Prize was awarded for providing good advice right now!

Thanks. I will keep checking the NRAS website and if the supermarket is too crowded keep to the corner shop.

But a diet of baked beans on toast for the next few months...

AgedCrone profile image
AgedCrone in reply toJimminey

Yuk!

AgedCrone profile image
AgedCrone

What I was meaning was we must stop running around like headless chickens not complying with what the scientists are suggesting.....

After all they are the best chance we’ve got ....the politicians have no more idea than you or I.

Europe is behind the Far East but if we do isolate ourselves probably have a better chance of recovering than poorer eastern countries.

We are not used to obeying rules. ...but this time it looks as if we don’t...those of us left will still be discussing this inMarch 2021.

So if the police or the military are given the authority to frogmarch home idiots who think they can ignore said rules...I’m OK with that.

I usually shop with ocado as they separate out fridge/freezer items. Usually wait 2-3 days to book. Entirely booked out to the end of April and no more slots released. Pointed out I'm disabled. Got an email saying I had priority booking - go to the website and exactly the same position as before. Thank God I keep stocked up but how many months do they expect us to wait without food? I hear we can register for the army to come round to help from Tuesday. Hopefully a bit of eye candy to cheer us up a bit.

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