Advice: Hey again everyone sorry to post again haha i... - NRAS

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emma88 profile image
19 Replies

Hey again everyone sorry to post again haha i received a video from my hospital about having RA and this virus it said anyone with RA puts them as a higher risk some alot higher due to different meds and other health issues i was just wondering if anyone has called any of their nurses or consultant during all this to get proper advice on where you fall in the risk category's i was thinking of calling the helpline but wasnt sure if its silly to do so with how much more stress they will all be under at the min with all this going on i dont want to feel a pain but my gp said im low risk but the video put me at moderate risk Obvs im not silly and will take the safe precautions just not sure if its best to try and get the fully correct info for me to make sure if and when work does re open i take the right measures

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emma88 profile image
emma88
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19 Replies
allanah profile image
allanah

What a great idea x

I sent an email to my nurse. She confirmed I’m vulnerable. Letters are still being processed. I’m on methotrexate and entanercept

emma88 profile image
emma88 in reply to

Not sure i have an email address ill have to have a look through all my notes and books i have off them im unsure about ringing as i know how busy they will be

Hi emnyoyre not being silly it is a worrying time. What meds are you on?

emma88 profile image
emma88 in reply to

Mxt hydroxychlorquine and got put on baricitinib two weeks ago due to bad inflammatory

in reply to emma88

So the advice is to stay home but you can go out for a walk each day as long as you keep your distance.

I'm due to start baricitinib soon who delivers it please? I need to call them

emma88 profile image
emma88 in reply to

Well my gp said im fine but the video says to social distance myself hence why im so confused and thinking about maybe calling the helpline. Mine comes from healthcare at home they should ring you to arrange your first delivery

KittyJ profile image
KittyJ in reply to emma88

Everyone with or without RA has to socially distance Emma 😊

in reply to emma88

We all have to social distance, everyone not just us that's got medical conditions. Sorry I didn't see you're on mtx as well as baricitinib so you should be shielding. Stay in house and Kerp distance from anyone you live with. Separate beds if possible , sep towels, bathroom. If you've only one bathroom everyone clean it after use.

emma88 profile image
emma88 in reply to

On the chart thing that other people have posted it says mxt only scores 1 meaning its just the usual social distance of 2m like most people. Im usually fine with RA dont worry too much about it all other than the odd occasion but since all this ive been so confused what i even fall under its crazy how much stress it can cause you hahaha

in reply to emma88

You get another point for the baricitinib don't you? Sorry I'm actually confusing myself I will go away now I'm about as much use as a chocolate fireguard!

emma88 profile image
emma88 in reply to

Hahaha awww no dont apologise you’re doing your best to help out in something that probably alot of us are confused about x

KittyJ profile image
KittyJ in reply to emma88

Two or more immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant

This scores 2 on the chart

helixhelix profile image
helixhelix

Two drugs 2 on the chart, so need to take your own decision as to whether to self isolate or just enhanced social distance. But if you feel fragile then perhaps go further. A lot will depend on your lifestyle, who’s in household and what they are doing, where you live and so on.

rheumatology.org.uk/Portals...

Moomin8 profile image
Moomin8

Hi, I posted an easy-read NHS chart I found today 🙂It might help to clarify x

RosieA profile image
RosieA

I agree that it can be quite confusing. I've managed to score all three!! The first chart I score I for being on MTX, therefore low, but it is very narrow tool. The flow chart by BSR /consultant is a slightly finer tool to my mind. On this I score a two/ three, as your automatically moderate with MTX and since get repeated infections get a Shielding score!!! It doesn't help. However, we are shielding as a family as my 86 year old mother lives with my husband and I and as she has significant underlying heart / diabetes we have no alternative. These are such terribly difficult times and ultimately we need to use best judgement and if in doubt and it means additional worry then you will need to make the phone call at the appropriate time, especially if you felt you needed additional support to keep yourself safe. Personally, I have come to the conculsion that, ultimately, safety will only be achieved for the vulnerable population through a vaccine /cure.

RosieA profile image
RosieA

Oh! Another chart from Leeds just posted, another score - move back one place to strict isolation. I'd make the call if I were you. Hope it goes well.

AgedCrone profile image
AgedCrone

If you look on the NRAS website there is a lot of information available...please look on these sites

Everybody should be reading all the advice available regarding vulnerability at this time. If in any doubt take the most stringent option......

Our rheumy nurses & our rheumatologists will probably be covering extra duties to assist with all the extra strain on the NHS, fromCV19 & do not have time to answer every query we may have...please help them out by researching on all Nhs/NRAS website?

If our rheumatologists thought we individually needed any special information they would’ve provided it for us.

Ella_12 profile image
Ella_12

Hi I called my rheumatology nurse she said my medication, methotrexate, sulfasaline and hydroxy, are working fine. My bloods are excellent and that I was no more at risk of complications than the next person. I work in social work so with my nurses info ringing in my ears I chose to work but had to sign a form saying at my own risk. I don't mind admitting it's feeling scarier by the day. Everybody's RA and meds affect them differently so I would take advice from your own team

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