NHS assesses risk of Covid-19 infection in rheumatology patients

Apologies if this was previously posted.

pharmaceutical-technology.c...

[PMRpro Ambassador]

Thanks - that was really interesting.

But it basically tells us not a lot about how patients should continue to manage their illness so it is just as well most of us had already got used to that anyway isn't it!!!

[jinasc in reply to PMRpro]

I loved the last sentence:

"For the duration of the current Covid-19 pandemic, it is important that rheumatology patients are not ignored by the NHS because they are not at the highest risk of infection, and instead have their medical needs adequately addressed."🤔😉

[PMRpro Ambassador in reply to jinasc]

But someone has said today that her rheumy is working on a Covid ward - not sure I would WANT to see them! There was a suggestion at one point that they would be useful in the right place as they are used to using some of the drugs like hydroxychloroquine (which one hopes is out of the equation now) and tocilizumab.

[jinasc in reply to PMRpro]

Ne neither - Sara was doing the same but they have just had a new baby - so he has moved.

[PMRpro Ambassador in reply to jinasc]

Moved as in moved house or moved job?

[jinasc in reply to PMRpro]

Wards - keeping away the lurgy now. Methinks he should have done it sooner.

[Hidden in reply to PMRpro]

Just FYI - FDA (Food & Drug Administration) FDA cautions against use of hydroxychloroquine or chloroquine for COVID-19 outside of the hospital setting or a clinical trial due to risk of heart rhythm problems>>>>>>>> fda.gov/drugs/drug-safety-a...

[PMRpro Ambassador in reply to Hidden]

That was probably before the study result was out? Looks like it at least...

[S4ndy in reply to PMRpro]

My Rheumy is working on a covid ward.

[HamishPMR in reply to PMRpro]

Can I ask you PMRpro, say I get Covid19, presently on 4 mg Prednisolone daily, how do I taper, given that the infection lasts a week to ten days? Hamish, Edinburgh..

[PMRpro Ambassador in reply to HamishPMR]

You don't.

If you get Covid-19 how you continue taper is likely to be the least of your problems and one you can ignore for some time until fully recovered. And if you were to get Covid-19 - I think it is pretty likely you might need MORE pred rather than less because at that sort of level there is the risk of a blunted adrenal response and like any serious infection - you may need more corticosteroid rather than less. That is something to discuss with the doctors - it must be brought to their attention that you are a long term steroid patient.

In the meantime - stay at home! It is the safest place to be unless someone in the household has the lurgy!

[Bennijax in reply to PMRpro]

Dear PMR Pro, is it possible, might you know, to get a Steroid card from the NHS, one to carry with one in case of need for hospital admission ? Or something to wear? Or with today’s digital sharing of our GP files, no longer necessary?

[PMRpro Ambassador in reply to Bennijax]

Digital sharing of GP files??? In the UK??? Not even a hospital can get those last time I looked. Though I stand to be corrected!! Doesn't even happen here in Italy on a widespread basis, the tax/vehicle licensing/pensions/healthcare computers are able to talk to one another but our hospital can't talk to the central main hospital 70km away!

A pharmacy may have a steroid card, I believe the charity has one (no idea how to get it though) and it is possible to find ones to download and print on the internet.

Bracelets/pendants of various sorts are available from various sources, some with a message printed on them, some with a central phone no to access notes, some of which can be updated as things change. The bracelets cost, some data systems are included, some do annual fees.

[Suet3942 in reply to PMRpro]

I’ve never been able to get one. Ive asked at pharmacies and 2 gps. Nobody can help

[Highlandtiger in reply to Bennijax]

endocrinology.org/media/356...

Someone posted this one on here recently. Otherwise pharmacies generally have them.

[Lookingforideas in reply to Highlandtiger]

I took a screenshot of this and put it as a wallpaper on my phone so that if I’m in an accident and unable to communicate - as long as the phones not smashed anyone can see it on locked screen ... I think it was someone one here who suggested it but can’t remember who 😃👍

[Constance13 in reply to Lookingforideas]

It would send me crazy looking at that every time I use my phone. I want to forget my pains not also be 'faced' with them so often!!! (Polyarthritis and PMR).

[Hidden in reply to Constance13]

You go "blind" to these precautions, I don't even notice my fave picture of a family dog which is my lock screen. It's s comfort for me, as someone who lives alone, knowing that all my emergency details are on hand.

I have 2 silicon bands and an SOS bracelet. Overkill?...maybe but no excuses for medics if I am found unconscious! Though diabetes a little different having a warning re long term steroid use seemed pertinent. I swapped the new one over but missed the old one so got both diabetes one and one that warns re insulin dependent and pred use. My sos bract has fallen off a few times but always turns up....I have had that 20yrs.

[Lookingforideas in reply to Constance13]

Yep, it does really annoy me as it makes it really hard to read any alerts that pop up but the thought of being unexpectedly hospitalised and not being given my steroids scares me into having it on there 🤪

[Hidden in reply to Bennijax]

Idband company was where I got my most recent silicone band for diabetes and ordered one for long term steroids yesterday just in case. ....the membership pack for PMRGCAuk I got had a blue card.

[maria40 in reply to Bennijax]

You should be able to get a blue steroid card from your (or any) pharmacy. I have a silicone wristband, with a medical alert sign and embossed with 'Taking Steroids'. You can get these from wristbands.co.uk

[4840 in reply to PMRpro]

I read of a study in China where they used corticosteroid for improvement of severe Covid-19 infection which was helpful. I would agree that more should be considered rather than less. I hesitate to taper down at this time.

[Hidden in reply to 4840]

I read several from china that said the opposite and the Lancet that said it was mixed. No one knows fully whats happening yet.

[jinasc]

No apology, however, GCA and PMR are not in the rheumatic club.

They are dealt with by Rheumatologists because of history - for many years both were thought to be an arthritis or muscle problem.

Really they belong to the Vasculitis family.

Some of us oldies, well remember elderly members of the family, sitting in chairs beside coal fires and complaining about their "rheumatic pains' and hardly able to move.

[fmkkm in reply to jinasc]

They should really change their name from rheumatologist to autoimmunolgists.

[PMRpro Ambassador in reply to fmkkm]

Some of them would need to learn a bit to qualify!!!!

[jinasc in reply to PMRpro]

'A bit' - !!!

[Rimmy]

Thanks M - so if we are going to be in the 'disaster zone' us lot may as well do it 'properly' and be at the 'apex' if this article is correct. As PMRpro says it would be good if we had some helpful even practical information with such observations but I guess it amounts to the shielding thing in the end.

Anyway we got brave today given that we have had no (recorded anyway) active cases in our wee town for a week or more and no new ones in the entire State of Western Australia - so we went out with masks and gloves to get our flu shots and then to (the after weeks of avoiding it) the supermarket (we even got toilet paper !!). We were the ONLY people out and about in this part of the world wearing 'full regalia' but we decided we'd rather look silly than be 'dead' !!

We realise things are rather different here than many places on earth to the north of us and children actually went back to school today in Western Australia - if their parents agreed.

But regardless of all this we just CAN'T taper at speed even if we want to - as everyone here knows we have little 'choice'in this matter - so if the virus is deadlier for us it seems VERY UNFAIR !!! and I for one 'protest' - to who and 'whatever' might be listening (LOL !!)

Hope you are doing OK and all the best to everyone here !!

[jinasc in reply to Rimmy]

Population‎: ‎

Australia 5,193,104 (2019)

UK 66.65 million (2019)

Can we borrow some of your landmass please?

I love the '193,104' .

[PMRpro Ambassador in reply to jinasc]

One does have to feel that social distancing must be rather easier in Australia and certain areas of the US

[alvertta in reply to PMRpro]

And rural Canada. 37,000,000

[Rimmy in reply to jinasc]

Australia population 2020 is approx 25,499,884 - (think you missed the 20 million) and landmass helps but most Aussies live on or around the coastal perimeter & large areas of Australia are unfortunately uninhabitable for 'most' people ....

[jinasc in reply to Rimmy]

I did and never noticed it so thank you. However can we still borrow some landmass. ⁉️

[PMRpro Ambassador in reply to jinasc]

Bit of sun wouldn't come amiss either

[jinasc in reply to PMRpro]

I want 🌧 ☔️ 🌧 ⛈ - 6 weeks without a drop -and this PM a teeny tiny shower. The water board will love me, I actually had to water the garden.......normally it is just the pots.

Super Star has buds. Alfred Bell blossomed with 14 buds on and 2 open roses and it is not even May.

[PMRpro Ambassador in reply to jinasc]

We did finally get rain yesterday and today ...

[Constance13 in reply to PMRpro]

So did we - cup fulls!!

[maria40 in reply to Constance13]

Ours came in buckets.

[Constance13 in reply to maria40]

Where do you live Maria?

(PS. It's like talking to my Granddaughter - same name).😂😂

[maria40 in reply to Constance13]

I'm in Worthing, West Sussex, and it rained throughout the day and into the night until I feel asleep.

[Peptink in reply to maria40]

We have been raining cats and dogs for months! We have turned into a jungle.

[fmkkm]

Thanks! It was interesting that PMR was mentioned. Also interesting, if you’re taking Hydroxychloroquine just keep taking it. I read an article yesterday that this drug is getting harder to get for rheumatology patients because of its use for covid.

[PMRpro Ambassador in reply to fmkkm]

Except the initial results of a clinical study suggest that whatever it does in Covid-19 it doesn't improve outcome!!! The situation re hydroxychloroquine in the UK has improved according to the LupusUK charity - who had asked the question:

healthunlocked.com/lupusuk/...