Covid19!

[Jaxine]

Hi there, Anyone worried about taking immune suppressent drugs whilst we are enveloped within the Covid19 Virus ?

[Hidden]

I believe in general we have been told to keep taking our medication but take extra precautions and not put ourselves in a vulnerable position... easier said than done

[Jaxine in reply to Hidden]

It is indeed, but logical advice

[Lolabridge]

Oh yes and there have been quite a few posts on the subject. Some have wondered whether they should stop their meds but the general advice is to continue them unless your Rheumy says otherwise.

[Jaxine in reply to Lolabridge]

Yes good advice

[helixhelix]

Yes, just scroll down the page and next one. Loads of posts about it.

[Jaxine in reply to helixhelix]

Yes I'm sure there are!

[happytulip]

Advice is to keep taking your usual medication unless told not to by your medical team.

It's vital we all keep our chronic conditions under control both to protect us and to not go into a flare which would put more pressure under an already strained NHS.

[Jaxine in reply to happytulip]

Yes you're right, the last thing I want is to experience a flare!

[lilyak]

If you're concerned, you should talk to your doctor. But first, you need to logically assess your risk. Is there an outbreak near you? Are you able to minimise your contact with people? How severe is your disease vs how are your lungs? Have you had pneumonia before, and how did that work out? how old are you? What is your general health like? How many immune suppressing medications are you taking? Plaquenil is the mildest...e.g. big difference between taking just plaquenil OR taking plaquenil, methotrexate, a biologic and prednisone at a dose higher than 12mg. It's very normal to be concerned, but logic needs to prevail about your actual risk. If you feel that you are high risk, e.g. say you have COPD plus heart disease and you're on high dose pred, plus a bio, plus 25mg of mtx weekly, and there is a cluster of covid-19 cases in your area, you should call your rheum and talk about your personal situation and how to reduce your risk. If you're (quite understandably) just feeling very anxious, but you're unlikely to contact someone with the virus, and you're just taking 400mg of plaquenil daily and your lungs are normal, then you're very likely going to be absolutely fine. Maybe talk to a friend who understands, because its always good to talk through your fears. Sure, the advice is to stay on your meds.

That's what every doctor will say as *generalised* advice. It's the safe 'party line'. Some people will warrant a review and a change of medication or be advised to self-isolate or other ways of reducing risk. Your risk is individual. Just because most people on here aren't high risk, you might be. Don't let people talk you out of your fears, make a logical assessment of your own personal situation, and take action from there.

Wishing you the best.

Lily

[AgedCrone in reply to lilyak]

I do you know you have the best of intentions...but please everybody don’t advise people to contact their GP to ask questions about this pandemic or their RA drugs now ........these are not normal times.

All the information we need about this virus and what we should do about it can be found on the NHS111 website.

Also check the NRAS Coronavirus Website.

GPs and A&E are already very over stretched anyway ....with patients with possibly much more serious problems that need treating urgently – they don’t really have time to discuss our Rheumatology drugs unless we are experiencing something very unusual....& if that is the case we should then contact our rheumy nurses,....but they are already at full stretch so please be patient.

As I said these are very worrying times....and we really must let medical staff get on with their every day tasks....& so unless you develop a VIRUS UNRELATED condition DO PLEASE check with the 111/website ....not your very busy GP.

I DO know a lot of people are very apprehensive about this situation, but taking up a doctor’s time asking questions about this virus...only takes them away from what could be YOURS OR YOUR FAMILY’s. serious situation tomorrow.

[Jaxine in reply to AgedCrone]

I have not even rang my rheumy nurse let alone my doctor! I've actually been very calm about this present situation, however, I thought maybe I should be more concerned with regards to being immune suppressed. I will continue to be vigilant and take my drugs, unless otherwise told not to.

[lilyak in reply to AgedCrone]

If it wasn't clear, only if you are a complex case should you contact your rheum or GP. But I think that was clear. Some people have very complex situations. Again, this is individual. What is right for you is not right for someone else. The vast majority of people can assess their health objectively and won't require a call to anyone. Logic needs to prevail, but its understandable that people are anxious. No one's suggesting that we should harass busy medical personnel.

[Jaxine in reply to lilyak]

Lots of sound advice here. Thanks for your time

[Jaxine in reply to Jaxine]

I've not at all been worried about the virus, until I woke up with a throbbing head ache, soar throat etc and then paranoia sets in!! But you gave an interesting read.

[reg01 in reply to lilyak]

Wise advice.

[RosieA]

Have a look at the latest NRAS Webinar where this issue is addressed by an expert. He discusses it at the beginning. Very reassuring.

[Jaxine in reply to RosieA]

Thank you I will.

[Stowe]

I spoke to the nurse at the hospital on Thursday, who advised to keep taking the medication. It's a worrying time, all you can do is look after yourself and hope others are doing the same. Lilyak has some good advice above. Take care xx

[Jaxine in reply to Stowe]

I haven't seen my rheumy nurse or consultant for 4 months, I thought of ringing the helpline but I'm feeling reassured that no news is good news with ref to stopping the drugs.

[AgedCrone]

If Covid19 meant anybody on any sort of prescription drugs should stop taking them....believe me NRAS/NHS & probably even the Prime Minister would be shouting it from the rooftops.

If you are at all worried about your RA medication you should contact your rheumatology nurse.

If you get any of the symptoms described for this virus check the NHS 111 website....it has instructions on what you should do.

Don’t call rheumatology.....don’t go to your GP ...don’t go to A&E....just check that website.

[Jaxine in reply to AgedCrone]

Yes indeed!

[Jaxine in reply to Jaxine]

I'm sure the rheumy helpline will be constantly engaged anyway, however I do feel that if one is experiencing alot of anxiety about their auto immune disease then a quick reassuring phone call could make a huge difference to someone struggling with their inner turmoil.

[AgedCrone in reply to Jaxine]

But the reality is........they don’t have enough medically trained people on 111 to answer all the extra phone calls they are getting.

Of course in an ideal world it would be lovely if somebody could answer your questions and set your mind at ease but right now that’s not possible.

That is why they want online enquiries rather than telephone. ???s

When you call 111 you are answered by a clerk...who takes your details

They ask you questions like do you think you have a temperature, have you got a headache, are you bleeding, is your breathing laboured.....right now there are probably particular questions re-the virus symptoms.

At the end of that conversation the computer tells person at 111 whether you need to speak to a qualified clinician.

Right now there just aren’t enough medics/nurses/Paramedics to man those phone lines.

But presumably there are people who will be reading the emails coming in on the NHS111 line....& prioritising them.

It is a difficult state of affairs but I am sure everybody is doing the very best they can.

[Lolabridge]

Yes I'm on Rituximab so have a suppressed immune system but, as RTX is given by infusion, I can't choose to stop my medication if I wanted too!

So I've decided to stay at home to keep away from others for the time being to give myself the best chance of not catching Covid-19. If I start to develop symptoms I will contact my Rheumatology Patient Helpline but until then I'm going to try to amuse myself the best I can. I've got a 1000 piece jigsaw of a Canaletto painting of Venice to finish as my first task ...

[LKD67]

Hi I'm in Italy and we're in quarantine. My RA consultant in the UK and my doc here have both told me to carry on with the usual drugs - methotrexate and prednisone. I don't go out at all and my only contact is my son who lives with me and he goes out once a week to do the shopping and go to the chemist. Can't wait for this nightmare to be over! Stay safe everyone!

[Pasjc]

I'm terrified though we may have been contacted with advice.