Social distancing for rheumatology patients on immunosuppressants and steroids flowchart.

[Moomin8]

Hi peeps🙂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 🙂

[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 in reply to charisma]

That's what I thought tbh... but it was published today.🤷🏻‍♀️I really don't want to confuse anybody though... Should I take it down or leave it up?

[charisma in reply to Moomin8]

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

Just two weeks ago, the British Rheumstology site described those on biologics as ‘high risk’. I had already begun strict social distancing (no visitors) and my son goes out for my prescriptions and groceries. I really don’t fancy ‘shielding’ at all.

Thanks, Moomin8

[Moomin8 in reply to charisma]

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

[charisma in reply to Moomin8]

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 in reply to charisma]

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

[charisma in reply to listellor]

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

I’m due a review anytime but no word on it. I’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, I’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]

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]

If it’s severe it puts you in high risk group

asthma.org.uk/coronavirus/

[Hidden]

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

[helixhelix in reply to Hidden]

I’m on same drugs and just social distancing +? You must have other factors?

I’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 what’s what is just not helping people at all!

[RosieA in reply to helixhelix]

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]

Useful thanks

[medway-lady]

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

[allanah]

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

[springcross]

Thanks Moomin.

[Lolabridge]

I'm still in the Pink! Thanks Moomin.

[Moomin8 in reply to Lolabridge]

😊

[Hidden]

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

[Moomin8]

Hi, I haven't had a letter yet - I am in the pink☺But 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?

[Hidden in reply to Moomin8]

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

[Moomin8 in reply to Hidden]

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.

[Hidden in reply to Moomin8]

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. I’m almost sure I’m going to go in until I hear otherwise. Possibly classed as a key worker. Thanks for your replies . Take care xxx

[Buckybri]

Can someone help me I’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 haven’t had a letter and I really thought that would of told me but if I don’t receive one tomorrow’s I would of thought I was ok .

[Thingybob in reply to Buckybri]

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

[charisma in reply to Buckybri]

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. 🥺

[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]

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 in reply to MandiS]

Thank you 🙂I have redirected people to your post in an edit👍🏻