Press Release: People with rare autoimmune rheumatic diseases at increased risk of death during COVID-19 pandemic.

[PMRpro]

Paul Howard of LupusUK has just posted this link and I thought it was also relevant to us as it includes GCA patients in the analysis.

The National Disease Registration Service at Public Health England and the British Society for Rheumatology have published press releases today about findings from a new study.

rheumatology.org.uk/News-Po...

Please note that this is about excess deaths from ALL causes in the relevant period - it does not necessarily mean they died of COVID but it could mean they died due to missing out on care they should have had but did not receive. That information will come in the next tranche of the analysis.

This is what experts have said about this:

"Many people with RAIRDs [not only lupus] have reported difficulty in accessing their healthcare since the pandemic began in March 2020. This was demonstrated in a report by the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) which found 80% of people with these conditions had experienced a change in their care and 37% said that their ability to manage their condition had been affected as a result. There was an overwhelming sense of ‘abandonment’ during the first lockdown. Whilst this study is looking specifically at the increase in deaths from the pandemic, we know that the impact has been much wider than this. There are many people experiencing prolonged periods ill-health or deterioration of symptoms because of changes to their care."

[DorsetLady PMRGCAuk volunteer]

Also found this yesterday when I was looking for something else about GCA - academic.oup.com/rheumap/ad...

Worrying.

[Bcol in reply to DorsetLady]

Both reports make interesting reading

[PMRpro Ambassador in reply to DorsetLady]

Wonder if they tested them all for Covid? After all, we know already that Covid appears to cause vasculitis of some sort.

[Frewen1 in reply to DorsetLady]

Five times as many GCA cases in a year ! Extraordinary

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Yes, but they don’t know why......

could be a increase of cases per se,

could be more GPs, A&E are recognising and referring to fast track centres,

maybe more fast facilities available,

maybe more patients going to GP or A&E earlier in illness - although doubtful given virus situation.

Interesting about more males though.

[Frewen1 in reply to DorsetLady]

Indeed. I was diagnosed in August, so will come into the current year’s statistics... btw, thanks to all advised me to ask for referral re extreme waterworks problem, GP agreed situation sounds excessive ( rheumy agreed ) so am awaiting referral to hospital. At which point I’ll be asking them to make the connection with pred, which neither GP nor rheumatologist have ever apparently come across before...(!)

[PMRpro Ambassador in reply to Frewen1]

But have they ever ASKED?

[Frewen1 in reply to PMRpro]

Well, I guess not, but then apparently no one has ever mentioned having this problem, before I did... very odd

[PMRpro Ambassador in reply to Frewen1]

Maybe people think less extreme versions are just aging?

[Frewen1 in reply to PMRpro]

Which could be a logical assumption if it hadn’t, in my case, come on suddenly a couple of weeks after beginning high steroids.. And as I’ve bored everyone with before, not just a slight problem, but Noah’s Flood. Never had a problem before.Anyway, who knows how long before I get a referral... and as I’m gradually tapering (15mg at moment), I’ll see if it improves...tho no sign at moment

[PMRpro Ambassador in reply to Frewen1]

You would be surprised how many DOCTORS don't associate a new onset sign/symptom with starting a new medication shortly before.

[Frewen1 in reply to PMRpro]

Hmmm... my GP actually asked me to forward to her any research I came across!

[PMRpro Ambassador in reply to Frewen1]

Often there isn't any research - except the empirical variety!

[Frewen1 in reply to PMRpro]

Well if there is, I believe you’d know it, your knowledge is phenomenal... but I’ve found nothing in my lay woman’s browsing, except for some that definitely connects pred with Amlodipine - I’m sending that to her. (Not applicable in my case as problem began before I was put on that as well..) .also, might I ask you, Rheumy wants to add another drug ( unnamed) to my cocktail as the Amlodipine not bringing down my BP ( steroid-induced, obv ) - I wondered why she’s adding, rather than swapping ? Sorry to pester you

[PMRpro Ambassador in reply to Frewen1]

I wasn't able to take the first line option for me (allergic reaction) so it was replaced with two others which worked well for a long time before I eventually needed a pacemaker and then they stopped one of them. I think the idea is that 2 low doses reduces the risk of adverse effects for either but together have a greater effect. I'd be happier with something other than amlodipine if it were me - it has an appalling reputation for side effects. But the interaction with pred would seem to make it a bit pointless when there are other medications that aren't subject to it so I agree, why not swap it?

[Frewen1 in reply to PMRpro]

Will follow up. Thanks x

[tangocharlie in reply to Frewen1]

I've recently had to increase my dose of Pred to 30 - all my bladder problems have miraculously gone, and the water retention issues have resolved after a few days of an overactive bladder. Before I was blaming the Pred, now I think it's the opposite, Pred has calmed the bladder down? I have no idea what's going on

[Frewen1 in reply to tangocharlie]

Oh blimey! But mine started when I was on 60 - now 15, no better .. how do we see a logical pattern?!

[Tahiri in reply to tangocharlie]

I found a very small amount passed and after taking 1/2 tsof Magnesium, passing urine with no difficulties. Also , I’m alive during the day instead of deadly fatigue. I recommend magnesium at 1/2 tsp a day. Lost my excess weight in fluid .

[Hildalew in reply to DorsetLady]

Having been totally confused, in both articles, by the percentages and comparisons, which quite often seem not to be comparisons of like with like, I found one thing in this article that surprised me:

The reasons behind our observations remain unclear however our findings support the viral aetiopathogenesis hypothesis for GCA and demonstrate the importance of maintaining access to urgent rheumatology services during periods of healthcare disruption.

Having consulted the dictionary, I understand that they are saying that their {unproved} theory is that GCA is caused by a virus. Were we aware of that theory? Does it make a difference to the way we might think about the condition?

[PMRpro Ambassador in reply to Hildalew]

It has been suggested in the past - primarily a link with herpes zoster which one study found in all the biopsy samples they looked at. However, correlation is not causation! Previous studies hadn't found an infection that was common to all patients. Of course, that doesn't mean it isn't the cause of SOME cases.

However - I think they may have forgotten that an infection, like stress or trauma, may be the final straw that sends the immune system into a tailspin and an autoimmune disorder develops. And it is fairly reasonable to get the impression from the things they have said happen in various patients during Covid that it causes some sort of autoimmune disorder. And we know how wideranging they can be in presentation.

[Hildalew in reply to PMRpro]

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Hildalew]

Yes we were aware it’s possible ......but PMRpro has given you a fuller answer.

[yogabonnie]

So do you suppose they just didn't HAVE any PMR patients or did I miss us. I saw GCA. ...do you suppose PMR is included? and does this mean untreated or under treated patients?

[Bcol in reply to yogabonnie]

Guess if they miss a diagnosis for us it doesn't have the same impact as a missed GCA diagnosis

[PMRpro Ambassador in reply to yogabonnie]

It is RAIDs - GCA is one, PMR, which I think is the most common cause of inflammatory rheumatic disease in over 65s, isn't.

[Bcol]

Thanks for this

[Bcol]

Both reports make interesting reading

[yogabonnie]

right before you answered me I texted my GP.. he wrote this. Bonnie,You're certainly a bit higher risk just based on age, but I wouldn't put PMR in quite the same category as those other conditions.

You're fitness and healthy lifestyle are a huge bonus.

Stay well,

Todd

[MrsNails in reply to yogabonnie]

What a great guy!

[yogabonnie in reply to MrsNails]

He has been terrific through all of this PMR... he knows a lot... listens to all of you and reads the articles I forward to him. he is the cat's pajamas.

[SheffieldJane in reply to yogabonnie]

You are lucky, it makes all the difference. My Rheumatologist actually gave me advice at midnight by email last week. I had emailed her at night so that she would get it in the morning. I thought I couldn’t buy that level of care.

[yogabonnie in reply to SheffieldJane]

I love that!! GREAT RHEUMY! if you can... come to the end relaxation.. on Thurs. just pop in at 2:40 and then do the relaxation if you don't want to do it all... and when we are done say hi!!!

[SheffieldJane]

I really should. There is something about the idea of Zoom that makes me shy. I have been invited to so many, local tree campaign, political party, researchers, Rheumie keep fit, Diabetes and I duck out of them all. My husband works from home and is on it all the time. No excuses at all. My 6 year old grandson is more savvy than me in the world of IT. But he’s on the other side of the world. 😉

[GOOD_GRIEF in reply to SheffieldJane]

Just so you know, you can join a Zoom and see who's on camera, while keeping your camera off. You can also mute your microphone unless you want to talk.

[SheffieldJane in reply to GOOD_GRIEF]

Thank you for taking the trouble to teach me this. I am someone upon whom machines play bizarre tricks.

[GOOD_GRIEF in reply to SheffieldJane]

You're not alone. I'm someone completely comfortable with technology, and one of the things I've become comfortable with is making mistakes. Good things sometimes happen as a result of those mistakes, like learning something new!

[SheffieldJane in reply to GOOD_GRIEF]

I hear you. X

[Hildalew]

Thank you for your very helpful reply.

Thanks you especially for highlighting the quote from the paper. I confess the paper is too much for me to read 'properly' and I have , so far, only had a stab at the Conclusion so I would not have seen it.

I had taken on board, way back, the second half of the quote, but had never noticed on this forum the point about 'almost all ADs (autoimmune disorders) being associated with at least one infection.

I'm inclined to PMRpro's point about an infection often being the 'final straw' though in my own case I think it was a period of (for us in the UK) very high temperatures following a series of very stressful voluntary 'work' situations in the previous 12 -18 months.

[Blackcat1M]

Morning PMRpro, i cannot find anywhere that tells us about if you have the covid vacination do you not take mtx that week,

[PMRpro Ambassador in reply to Blackcat1M]

It was the conclusion for a study on another vaccine. It won't appear anywhere in association with the Covid ones.