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.
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."
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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...(!)
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
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
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?
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
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 .
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?
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.
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?
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.
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.
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.
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!!!
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. 😉
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.
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!
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.
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