Social distancing for rheumatology patients on immuno... - NRAS

NRAS

37,229 membersā€¢46,073 posts

Social distancing for rheumatology patients on immunosuppressants and steroids flowchart.

Moomin8 profile image
Moomin8
ā€¢29 Replies

Hi peepsšŸ™‚Hope this finds you well. I saw this on the NHS Leeds Teaching Hospital site. Hope you find it useful.

leedsth.nhs.uk/a-z-of-servi...

I have been advised by MandiS (see comment in this thread) that there is an updated flow chart. It still puts me in the sheilding group tbh, but please check their post šŸ™‚

Written by
Moomin8 profile image
Moomin8
To view profiles and participate in discussions please or .
Read more about...
29 Replies
ā€¢
charisma profile image
charisma

That is different to the chart for points on the Rheumatology webpage... confusing!

According to this link I have a score for self isolation and social distancing at my own discretion. rheumatology.org.uk/Portals...

But the NHS Leeds chart shows I should be shielding due to biologic drug infusions, recent flares, and taking Prednisolone for several months too, even though it is 5mg and has been at that level for since 3rd March.

Moomin8 profile image
Moomin8ā€¢ in reply tocharisma

That's what I thought tbh... but it was published today.šŸ¤·šŸ»ā€ā™€ļøI really don't want to confuse anybody though... Should I take it down or leave it up?

charisma profile image
charismaā€¢ in reply toMoomin8

Leave it up... I might be more inclined to believe the stricter one, for my own safety! šŸ™‚

Just two weeks ago, the British Rheumstology site described those on biologics as ā€˜high riskā€™. I had already begun strict social distancing (no visitors) and my son goes out for my prescriptions and groceries. I really donā€™t fancy ā€˜shieldingā€™ at all.

Thanks, Moomin8

Moomin8 profile image
Moomin8ā€¢ in reply tocharisma

Thank you Charisma for you positive response. Stay safe and well x

charisma profile image
charismaā€¢ in reply toMoomin8

My brother in law heard through Health & Safety at work that letters going out are backlogged. Very likely true.

If I get an official letter, I will certainly do what it says. You stay safe and well too. X

listellor profile image
listellorā€¢ in reply tocharisma

well ocording to that chart i sohuld be shielding . im leaving it for my specialisty when i talk to her on wednesday

charisma profile image
charismaā€¢ in reply tolistellor

You are fortunate to have an appointment, and not cancelled.

Iā€™m due a review anytime but no word on it. Iā€™d be happy with a phone or video review. If my blood test in two weeks is cancelled, I will push for some kind of review.

Re shielding: I am doing a mix of strict social distancing and self isolating. Nobody allowed in to see me, Iā€™m not visiting anyone, not going anywhere except one daily walk for exercise and fresh air. No garden and am in a first floor flat, really need out more but staying safe.

If I get a letter, I will do full shielding though it will be a big stress. Might trigger a flare... hope not! I have an exercise bike and plenty to occupy me. Not like solitary confinement in a prison or hostage situation. We will get through it. :-)

Moomin8 profile image
Moomin8

nhs.uk/conditions/asthma/

I neither have asthma nor am I medically trained so can't really comment, but I have found this link if it helps?

helixhelix profile image
helixhelix

If itā€™s severe it puts you in high risk group

asthma.org.uk/coronavirus/

Well Iā€™m on methotrexate and etanercept my Rheumy nurse put me vulnerable which would be shielding so this is consistent with this chart,

helixhelix profile image
helixhelixā€¢ in reply to

Iā€™m on same drugs and just social distancing +? You must have other factors?

Iā€™m happy not to be considered more of a risk because that matches what I consider right for my overall health and personal circumstances.

I do wonder whether all this stress trying to work out whatā€™s what is just not helping people at all!

RosieA profile image
RosieAā€¢ in reply tohelixhelix

I agree with the level of confusion - I can rate myself between low to highest within a few minutes, using the two BRS tools and the one from Leeds. I am fortunate that it doesn't really make a blind bit of difference but I can see from the posts that it is creating signficant angst among the group who are having to think about returning to work. There is the moderate subset, where strict social distancing would apply. To ask them to return to work seems completely inappropriate. I think it true to say all are overwhelmed. What times! Keep safe.

Mmrr profile image
Mmrr

Useful thanks

medway-lady profile image
medway-lady

Thats great and to be honest for me reassuring. Thank you x

allanah profile image
allanah

My friend sent it to me too, quite clear I thought

springcross profile image
springcross

Thanks Moomin.

Lolabridge profile image
Lolabridge

I'm still in the Pink! Thanks Moomin.

Moomin8 profile image
Moomin8ā€¢ in reply toLolabridge

šŸ˜Š

Iā€™ve not had a letter but according to the chart Iā€™m the pink due to recurrent infections (8 urine infections last year) and methotrexate. Due back to work Tuesday after a weekā€™s annual leave. Donā€™t know what to do. Any advice would be appreciated

Moomin8 profile image
Moomin8

Hi, I haven't had a letter yet - I am in the pinkā˜ŗBut it has been suggested that there is a backlog so I'll wait until 30th March before I enquire. You could ask your GP about not returning to work?

ā€¢ in reply toMoomin8

I rang today and was told GPs arenā€™t doing any kind of letters for this and itā€™s down to the employer!! I said surely that canā€™t be right they not medically trained, but that was the answer I got . No idea what to do

Moomin8 profile image
Moomin8ā€¢ in reply to

I'm sorry to hear that you weren't able to get the answers that you need. Are you a key worker? If not, are you able to work from home? I have a clinical nurse phone number who I can call to ask about certain things but I'm not sure if that's operating atm - I haven't had to call tbh. The letters don't come from the GP though to be fair. I did book a call with my GP to update him on exactly what meds I'm on though. He said to wait until 30th March at least to see if I get a letter but advised that I should sheild due to my meds.

ā€¢ in reply toMoomin8

I also have a Rheumatology nurse phone line which I may try on Monday. I work in a small office for a charity which supports adults with autism and various special needs doing admin, wages etc. Not possible to work from home. Iā€™m almost sure Iā€™m going to go in until I hear otherwise. Possibly classed as a key worker. Thanks for your replies . Take care xxx

Buckybri profile image
Buckybri

Can someone help me Iā€™m confused ( very easily done ) on on mtx and biologics I also have been on steroids which I finish ghis week so the dosage went down each week to one tablet a day now which finishes tomorrow, I also am on two tablets for blood pressure . I have seen so many charts and was thinking of going back to work next week as I havenā€™t had a letter and I really thought that would of told me but if I donā€™t receive one tomorrowā€™s I would of thought I was ok .

Thingybob profile image
Thingybobā€¢ in reply toBuckybri

I am on mtx , sulpha and 2 drugs for hbp and am self isolating. Apparently ACE inhibitors for hbp increase the risk level

charisma profile image
charismaā€¢ in reply toBuckybri

According to this chart, you are like me... shielding. But I am only doing self isolating with strict social distancing till a letter forces me to abandon one daily exercise period in fresh air. šŸ„ŗ

Balletmum71 profile image
Balletmum71

Thank you Moomin8 .

Really.useful information .

Havent been sent a letter but I'm on steroids and Benepali and have asthma.

Also all though I'm on Somerset my rheumy is in Exeter. So if I need a letter it will come from them I guess .I also have asthma too .

MandiS profile image
MandiS

I received one flow chart today which is quite different to yours. The information seems to have changed please look at my other post for the information

Moomin8 profile image
Moomin8ā€¢ in reply toMandiS

Thank you šŸ™‚I have redirected people to your post in an editšŸ‘šŸ»

Not what you're looking for?

You may also like...

Social distancing and food shopping

So, if you have RA youā€™re in high risk group and shouldnā€™t go out unless necessary. Well, buying...
GinnyE profile image
ā€¢

Social distancing and food shopping update

Well, I did it. Turned up at Sainsburys at 7am for old and vulnerable people shop. There were...
GinnyE profile image
ā€¢

Preliminary research info on Covid-19 in rheumatology patients

Hello all, I just saw a tweet about the findings from the Covid-19 Global Rheumatology Alliance....
dawkin_S profile image
ā€¢

Six months on Enbrel and good feedback from Rheumatology appointment.

Hello all, I've had some ups and downs whilst being on Enbrel this last six months, but I would say...
petalnumber2 profile image
ā€¢

Questions for a first ever rheumatology appointment on Friday morning?

I've finally got my rheumatology appointment on Friday in our local hospital. I haven't even been...
ā€¢