Perhaps not the sort of finding we want to hear - but if you needed a reason to be conscientious about social distancing and hand washing these are preliminary findings from the Covid-19 Global Rheumatology Alliance:
Now this isn't saying you are more likely to catch Covid or to die - but you are more likely to have to go to hospital if you develop Covid-19 symptoms, i.e. as I have been saying all along, the disease may well be more difficult to manage. But combination with the other risk factors of age (especially over 70), lung disease, cardiovascular disease, kidney disease and diabetes are all very significant too.
However - I am firmly of the opinion that rheumies should NOT be trying to force us to reduce our dose come what may but encouraging and supporting us to shield effectively. By developing a flare of the disease you are going to need MORE medication at some point not less and that is likely to also contribute to a need for hospital management and a more complex and protracted recovery. And of course - patients on a higher dose of pred are also likely to have more severe disease which may make a difference.
I am reposting this as a lot of the discussion had become irrelevant - I think the best way to deal with that is to start again. If the few people who did post very relevant comments would like to post them again, please feel free to do so.
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I don't have anything to lose. PMRpro had become abusive to myself and someone who had supported me. She obviously has reconsidered her position about the action to which I mildly suggested that in these extreme times She should not have taken and is now trying to disguise it. I dont mind her disagreeing with me but i do mind her insults. I have a great support, so I am ok, but I see that the other person whom she mocked is no longer registered on this site and I am worried about her. Horrific to find that an individual who is supported by this site should behave like this. Trust her at your peril! I think probably over and out!
It's so important, isn't it, to be alert to the difference between causation and correlation - and not to get unnecessarily spooked by things. This is not a claim that pred is, in any way, a cause of illness, but an observation about the patient's medical history. And it is a statement that there is a significant number of patients that share this particular bit of 'history'.
I'm sorry the corticosteroid has been labelled an extra 'risk' factor. Demonising our good friend again - on the basis of no evidence.
I prefer to look at an alternative approach - how much worse might the patient's condition be if they weren't taking pred? I have been intrigued by reports of overreaction of the immune system in some patients - extreme inflammation of the system. The reports I read wrote of doctors puzzlement. (I've just discovered the term 'Cytokine storm' - and lots of links to follow up.)
I prefer to think that people taking pred are actually protected from that particular symptom, because pred is taking care of it. The association between lower doses and less likelihood of hospital admission - is something about the pred having been successful in waking up the adrenal gland andabout the steroid and the gland, between them, providing enough cytokines to cope.
So yes, absolutely, PMRpro, we should not let our rheumy/GP/whoever reduce our dose of pred on the basis of this article. It will possibly make admission to hospital more likely and our illness more acute.
And Poopadoopy replied:
Oh yes.... correlation or association are not causation. It's very hard for people to grasp that when they read things online. 👍
I'd been wondering about that cytokine storm too. I have no scientific knowledge whasover, but as I'd read that Pred helps the CS caused by PMR I had been wondering whether it might actually be useful to be on it when fighting infections. I'll leave that to the experts but thanks for joining the dots for me.
I think initially in China they found it didn't help and pred made things worse because it was used once the condition went too far. But that was months ago. They are suggesting (lancet or bmj - can't remember) that low dose pred earlier once the virus is caught may help, but as of a month ago they were just designing research projects. There are a few that I have seen over the weeks from animal models to human trialling. I must have a look and see where they have got to now.
My suspicion is that in mild cases it may postpone the CS - but it isn't enough for a real hurricane.
I wonder if this paediatric "thing" may shed some light as it seems to be a very delayed effect, similar to Kawasaki. Time will - or may - tell. But I don't think I will hold my breath
I did weigh up these factors but in the end with no real help from GP I decided to start on 15 mgs as PMR has returned after 4 years. Now having seen this in black and white I am wondering if I did the right thing. I have had the pred for 10 days. Is this too long to stop abruptly.
After the first week of testing pred My ESR had gone up from 35 to 47! That is what made my decision.
I had decided that I could probably manage with paracetamol albeit a reduced way of life and feeling of well being but then I also wondered if at 75 it was a good idea to live with inflamed blood vessels.
Oh dear now I am thinking I did the wrong thing as I mentioned should I stop or is it too late? I only get support from GP if I ask for it eg blood tests etc. Have only had ESR and CRP which was 6 before The week of pred .
At 75 you are in a risk group anyway - and should still be shielding or at least being very strict on distancing. It isn't that the pred makes it more likely you will catch it - and the link may well be that these are people with other conditions requiring higher medication that in themselves make management more difficult. Those won't change by reducing the dose, in fact your condition may deteriorate as a result of not taking the pred. Vascular disease must be a risk factor - it would come under cardiovascular risk and could affect the oxygen supply to tissues and organs and that is the main difficulty in Covid-19.
You have also to remember that NOT taking enough pred leaves the inflammation uncontrolled, paracetamol won't do anything there, and that increases the risk of the PMR progressing to GCA. If that were to happen you will need even higher dose pred or risk losing your sight - and that really would be a tragedy. That same applies for management in hospital.
If anything I would consider trying 10mg to see if that is enough - but overall, if it were me, I'd continue with 15mg as normal with early stages PMR. I'm on 12mg - I struggle to get lower so that's where I am.
Thank you yes I will just carryon with lowering according to the BSR guidelines. Last time I dud help with admin etc with the SW PMRGCA group so picked up quite a bit of knowledge. It was all left to me last time so I will do it myself again! Took a bit longer last time as my GP had given me 40 mgs to start this time She wanted to do the same but I asked for 15 . I will get in touch with her for the odd blood test. I am still in touch with the above group so am supported in one way
PLEASE DON'T REDUCE YOUR DOSE. THE TITLE TO THIS ARTICLE IS MISLEADING. It is a classic case of misinterpretation of data - making something that is observed to be happening alongside a situation into a cause of that situation.
The artIcle does NOT actually give evidence that the higher dose of Pred CAUSES the hospitalisation of a COVID 19 patient. It only observes the level of prednisolone in people's system and observes that there are fewer people on a lower dose of Pred than those on a higher dose of Pred. Totally unprofessionally it then relates these figures to the 'risk' level.
Someone experienced in the use of Prednisolone to treat PMR or GCA could take the view that Pred is actually protecting a patient with Covic 19 from one of the symptoms - which is a Cytokine Storm - the sort of condition that we endure before diagnosis of PMR or GCA and which is calmed by prednisolone.
The patients on higher doses are at an earlier stage of the condition for which they are taking Pred and NEED THE PRED AT THAT LEVEL to avoid the trigger of the virus setting off the condition that it is treating. The patients with a lower dose are at a much later stage, their immune system is in a healthier state and combined with the pred, is able to resist the trigger of the virus.
I believe the authors of the article could justifiably be criticised for their title and the use of the word 'risk'.
Thanks for the post. I am currently reducing from 20mg in January now 12.5. Attempted 10 the last few days but feeling sensations around my shoulders so I think I should go to 12.5 or even a little higher? Before attempting 10mg all was good. I am being called back to work soon. I work with the public in a busy national park here in California which will be reopened soon so I am obviously worried about covid. It seems here in California people are forgetting covid exists and crowds have been overwhelming in the other parks and mine, Yosemite, will surely be overwhelming. It is allergy season and my asthma is also flaring a bit. We need a vaccine!
I fear everyone is forgetting about Covid as soon as the rules are being relaxed - in Bergamo in Lombardy, northern Italy they are out in the evenings as if it had never been, If the people of Bergamo don't remember after what they have been through - nowhere will.
Next time, once you have got yourself sorted at 12.5mg, try just 1mg at a time - and try using a slowed taper like one of these:
Thanks for your advice , always spot on. I finally got my rheumatologist appointment after nearly 5 months. She agreed with pmr diagnosis and wants to taper from 15 down 1mg ever 2 weeks. She also added 10mg methotrexate once per week. I have never heard of this but she said would get me off prednisone faster and easier. I live in California and our lockdown is being lifted and people are acting like covid doesn’t exist anymore, large crowds, very few masks. Even Vegas has reopened with people flocking to casinos of all places. Disneyland will unbelievable open soon despite cases rising rapidly here. Sorry about going on about that but it is concerning as we have a president who wants us to forget covid exists so he can have his economy. Enough of that. How do you feel about this 1mg taper every 2 weeks? She wants to get me from 15 down to 10 this way and then stay at 10 for a while. How do you feel about methotrexate? I am concerned only in relation to coronavirus if adding methotrexate could effect my immune system. Thanks for your thoughts!
There is no proof methotrexate will get you off pred faster or easier - or even get you to a slightly lower dose. It depends on the patient. I know several who have got to a lower dose with mtx than without but they were by no means "off" pred. All mtx did for me was introduce so-called steroid side effects I have never had with just pred! It was quite surreal!
MrsNails does find it helps her get to a lower dose but she certainly wasn't off pred altogether. She has posted a lot about it and says she will update her story soon.
Personally I wouldn't want to start mtx until Covid-19 is far less of a factor - I think someone has said her rheumy is delaying it until the infection rate is low.
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