Maybe a bit of clarification: what a rheumatologist said (today!)

[PMRpro]

A couple of days ago I wrote to Prof Sarah Mackie from Leeds who says:

" ... it must be particularly challenging for a board like HU with global reach. Plus, as you say, the advice from on high is constantly changing, particularly in countries where the prevalence of the infection in the community continues to rise (ie probably everywhere except perhaps South Korea/Japan!). We all are working with limited data with a lot of uncertainty.

We made a YouTube video for our rheumatology patients on immunosuppressants/steroids to explain our own local guidance further.

I personally think individuals faced with conflicting advice should check with their own doctor, and if it is confusing, in the meantime take the more conservative option. It’s not just what drugs people are on, it’s their past medical history as well."

This video takes you through the flow chart that has been available on the forum for some days step by step - it is impossible to get it wrong by misreading the small print!

Personally, I would NOT take a nurse's opinion if it disagreed with this. Nor a GP or anyone else being dismissive about your risk.

youtu.be/uNGPfntHgtI(Not working as expected?)

[Hidden]

Thanks for this. I got the NHS letter out of the covid fumigation and processing area earlier. The back basically has a table that almost replicated the material in the flow chart. Given the rheumy has been quite good at managing my PMR conservative the past 2 years, listening to me, asking re symptoms rather than just bloods, it fits in with where he stands. Take a conservative approach. Mind you my PMR treatment, and other medical history, sit me in a clear position rather on some blurry borderline.

[PMRpro Ambassador in reply to Hidden]

But even so there are people in a clear position - who are then dismissed by a healthcare professional or employer. It is something of a mess ...

[Hidden in reply to PMRpro]

Yes. Hopefully gathering evidence from the resources here for gp and/or employers will help them determine a more solid position. It is ridiculous.

[Hidden in reply to PMRpro]

The video not working. Just sat to watch it...

[PMRpro Ambassador in reply to Hidden]

Should be now - strange, copying the link from YouTube was the one that didn't work, the other is out of my email.

[Hidden in reply to PMRpro]

👍

[Hidden in reply to PMRpro]

YouTube has gone weird recently when sharing or copying a link.

[Joaclp]

Thank you. As always, you have provided a medically sound resource.

[PMRpro Ambassador in reply to Joaclp]

I believe in going to the top!!!

[Estellemac]

Thanks for this its concise clear and very easy to access.

[Rugger]

Thank you for your efforts on our behalves! I received the paper copy of this from the Leeds Rheumatology Team, but it's good to share it with others on H U.

[PMRpro Ambassador in reply to Rugger]

It is basically the same as the one we shared as a pdf/paper version a few days ago but this is so much easier for use on a phone or if your vision isn't all it might be.

[Rugger in reply to PMRpro]

Yes, it's explained so clearly. The way the reader gets her tongue round the names of all those drugs is amazing!

[SheffieldJane in reply to Rugger]

For the first time I know how to pronounce some of them.

[Hidden in reply to SheffieldJane]

It was a bit like Bill and Ben...but yes...a few weren't pronounced as I thought they may be.

[SheffieldJane in reply to Hidden]

Flubadub! Meeethotrexate.

[Hidden in reply to SheffieldJane]

Exactly...😊

[Rose54]

Thank you so much

That makes it clear I am in the Shielding group

No letter

Hope you are keeping safe

[GOOD_GRIEF]

Personally, I think it's great that we have access to information from all across the globe, but we need to be aware of referencing only reliable sources, not rumors, conspiracy theories or other quackeries, which are surely abounding on this side of The Pond.

[PMRpro Ambassador in reply to GOOD_GRIEF]

I do spend a lot of time looking stuff up - and reporting where appropriate

[GOOD_GRIEF in reply to PMRpro]

Yes, you do. And we thank you for being so reliable in your sourcing. We can always trust you to say what's what, and what's not.

[PMRpro Ambassador in reply to GOOD_GRIEF]

Thank you

[GOOD_GRIEF in reply to PMRpro]

No, thank YOU.

[Spanky2019]

Thank you. Will have my first televideo appt with rheumy next week. He's had me wear mask & he's worn mask with me the past 3 to 4 months due to flu season. As always your info is so helpful. Appreciate the time you spend to help inform us.

[Fishponds50]

Thank you this is excellent and clear advice that is easy to follow. I wasn’t sure where I fit in as I’m on 15 mg prednisolone but this clarified it as ‘strict social distancing’.

[Coffeebeans]

Thank you for doing this PMRpro.

This is the advice I was given over the phone by my own rheumatology team early on in this pandemic due to raising my steroids to 20mg. I'm thankful they are so good like this because I don't think my new dose has caught up with NHS England/GP, who ever is writing the shielded letters as I haven't received one.

Luckily my employer is happy to accept my status without question and i can work from home. I feel for those who are having to evidence shielded status and cannot do this easily.

My GP reception were not able to answer how/when I would receive a letter (I was calling about a repeat prescription for Pred so thought to ask) I'm glad I don't seem to need it at the moment.

Fun times.

[Purplecrow]

The video is clear and to the point. I like the flow chart which leads to an absolute conclusion with no maybe-ifs.

Thanks for bringing us the “best there is.”

Stay well, Jerri

[borednow]

Absolutely brilliant - many thanks.

[maria40]

Very helpful. I'll ring my GP tomorrow as previously I was dismissed by a receptionist as not being on a list which the NHS had sent them. This time I'll as to speak to a GP as I have been on a dose above 5mg for the past four months.

[Mai45]

Very clear and helpful. Thank you PMRPro, and thank you to Prof Mackie

[Daffodildude]

Thank you so much PMRpro for sharing the video. It is so much clearer and easy to understand. I've been walking our dog once a day, which I thought was ok following Government guidelines but, having watched the video, I find I shouldn't be going out at all. Our children have been doing our shopping since lockdown as they worry about me. It looks like I'll be walking Kiki up and down the garden now! At least we have a lovely garden. I feel so sorry for those people in bedsits and flats, especially with young children. Take care and stay safe everyone.

[Hidden in reply to Daffodildude]

Love the photo of Kiki....my dog has got used to being in the garden. She is a working cocker used to running free in the countryside. The first week was a bit grumpy but seems fine if I play a bit. My sister offered to take her but we belong together and she and my sister's dog are sworn enemies come food time. I would be lost so a selfish decision I am afraid. Stay safe.

[Daffodildude in reply to Hidden]

Hi Poopafpopy. Cockers and Springers are very energetic aren't they? Fortunately Kiki is a lazy dog so I doubt she'll be too bothered not going out. To be honest, it was probably more for me than her! Take care and stay safe x

[Hidden in reply to Daffodildude]

Fortunately mine is almost 13. But still like 1 to 2 hours in the fields and rivers. I miss the walking too and this week my body is taking me so. 🌻

[Daffodildude in reply to Hidden]

Take care xx

[karenfizz]

Thanks very much for this, the flowchart is really helpful. I'm a physio who has responded to the NHS request for returners; I'm down to 5mg pred but also have had to start Sulfasalazine for sero neg arthritis on top of PMR so this has made the decision easier for me, as I will need to be in a non patient facing role

[Hidden in reply to karenfizz]

And as pmrpro says...save yourself to do your usual job after when the others possibly need it. 🌻

[Constance13 in reply to karenfizz]

I also have zero neg polyarthritis & PMR. How long have you been on Sulfa......? Did your rheumy suggest it to get off pred?

[karenfizz in reply to Constance13]

I was reducing my pred & got down to 3mg (from 20mg start in May 2018) but then had an episode of hand pain/swelling over Xmas. Rheumy had suggested methotrexate previously as she thought I had sero neg arthritis in addition to PMR but I had refused, saying I wanted to just keep reducing the pred. This recent flare was different, hands useless till lunchtime, so reluctantly went on to Sulfasalazine in Jan. Still on the 2 weekly bold monitoring although last one is next week; I note in letter to my GP rheumy has changed my diagnosis to 'polymyalgic onset sero negative inflammatory arthritis'. Once the 3 months is up I will get back to reducing the pred, hopefully.

[Constance13 in reply to karenfizz]

My rheumy tried to put me on MTX but I was really sick with it, so he changed it to Planquinel (S??) - same thing happened so he said "you'd better just carry on with pred"!?!

[karenfizz in reply to Constance13]

I opted for Sulfasalazine over methotrexate as it seemed a bit less toxic (!); so far seems to be suiting me ok.

Good luck with the reduction & stay well

[Longtimer]

Wow, on a Sunday just got standard 8 page reply from my surgery, with the government printout of of which position I am in.....highest clinical risk, but not shielding.....oh dear it boggles the mind....will carry on as I am....

[PMRpro Ambassador in reply to Longtimer]

So highest clinical risk equals stringent distancing? What do you have to be to shield?????

[Longtimer in reply to PMRpro]

Exactly!!

[Hidden in reply to Longtimer]

Multiple co morbidities if I am an example. 🤪 It seems to be a bit of a lottery so far...and I don't think that's far off the truth. Gov say

"Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others. We are strongly advising people with serious underlying health conditions (listed below), which put them at very high risk of severe illness from coronavirus (COVID-19), to rigorously follow shielding measures in order to keep themselves safe."

I got a shielded text the first day, and for a week after other texts, and a follow up letter a week later. Plus letters from drs, diabetic clinic and rheumy. This initial text said:

"NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.

Read more advice about staying safe at home.

gov.uk/coronavirus-extremel.... We will send you more messages with information."

The only thing I can think of is that with multiple co morbidities they assess your risk differtly but who knows!??Here is the official list of shielded.....

nhs.uk/conditions/coronavir...

[Constance13 in reply to PMRpro]

Unfortunate!!

Nothing like that over here. Mind you people as so disciplined (at least they are in our country area) different in the big towns - different mentality!

[Hidden in reply to PMRpro]

Multiple co morbidities if I am an example. 🤪 It seems to be a bit of a lottery so far...and I don't think that's far off the truth.

I got a shielded text the first day, and for a week after other texts, and a follow up letter a week later. Plus letters from drs, diabetic clinic and rheumy. This initial text said:

"NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.

Read more advice about staying safe at home.

gov.uk/coronavirus-extremel.... We will send you more messages with information."

The only thing I can think of is that with multiple co morbidities they assess your risk differtly but who knows!??Here is the official list of shielded.....

nhs.uk/conditions/coronavir...

[cataline]

Thank you once again for sourcing invaluable information. The flow chart makes it all so easy and straightforward, and the advice of Prof Sarah Mackie lends a sane voice in what can at times seem a crazy world full of conflicting opinions and some absolute nonsence.

[Grammy80]

I tip my hat to the UK for taking steps like these...😉

[Hidden]

Very informative and clarifies situation. I definately need shielding but haven't received government letter, maybe because just 69? Already decided to remain home for 12 weeks and only attended medical checkups for previous 3 weeks before lockdown.

[Hidden in reply to Hidden]

High risk in to the Rheumatologists context, I think, does not necessarily always translate into being shielded. It's hard to understand why and maybe you will get on, but you may not be eligible too. It's says "extremely vulnerable" on the shielded paperwork I received and includes a coordinated response from Rheumatology, diabetes and endocrinology departments and my GP for other health issues like hypertension, hypothyroidism, high cholesterol, peripheral neuropathy etc. I also live alone and did wonder if my PIP social care status via DWP was factored in too. I suspect due to co-morbidities, I ended up in the first raft where there's an extremely high risk that I would be almost automatically hospitalised if I got covid19.

I suspect its being rolled out still and several thousands more are vulnerable or high risk will be added. The first raft was 800,000 but up to 1.4-5m in total will be shielded.

[Nannie-C]

Not had any communications from Dr or NHS, been on pred for over 7 years so would have thought I should shield anyway. Out once in 8 weeks to emergency podiatrist. I have friend who have a husband and a son officially shielding, both go out regularly. I despair at the understanding of some people of the severity of this virus.