This just appeared in my Inbox - thought people would be interested in the risk identified for patients on steroids. And it sounds as if it might be a poke to get them to look more closely at us in relation to Covid - where else will they find such a cohort of rheumatic disease and pred!!!
Reinforces my intention to continue as I have for the last 2 years - has served me well so far
where they found existing autoimmune disease increases the risk of Long Covid:
"The frequency of pre-COVID autoimmunity and asthma in the current cohort was far higher than the overall US population, suggesting the potential that these medical disorders might be risk factors for PASC development."
(... a condition known as post-acute sequelae of COVID 2019 (COVID-19) (PASC), or long COVID. Even though PASC is not widely described, it is most commonly defined as COVID-19 symptoms that continue longer than 30 days.)
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I think PMR is becoming more noticed recently. I heard that Pfizer had now listed it as a possible side effect of their vaccine. I am not sure if that is true or not.
Interesting thought. I’ve had more pain this year than when first diagnosed with PMR - plus CRP levels have risen 3 fold since January. Had the Pfizer jab in November! My Fheumie, and I, have been wondering what’s going off. Getting ready for the 4th. Wonder what’s next in reactions.
I hope you’re fully recovered now! They’re not nice are they? I had reactions to them all. The worst were awful headaches, similar to my GCA, with high BP that lasted over a month. Severe nose bleeds. Breathlessness that I haven’t had before that hasn’t gone. I’m having all sorts of tests to see what might be going on. Feel suddenly aged! I haven’t had Covid though!
I don't think I have had Covid, but I suppose I might have had for all I know. They say over 80% of UK have now had it, I am sure a lot were not aware.
I said much the same to the rehab rheumy I saw this morning - real flare of the PMR but I don't think it was Covid or the vaccine, just been one thing after another since OH died and all catching up with me. NOT impressed!!!!
Sorry to hear you are having problems hope you get better soon.Before I got covid ,my OH had had a cough,feeling tired in general not is usual self, he never took a covid test as he said it’s just a cold but, one does wonder.
I think that is one of the most common wrong assumptions made! "It's just a cold ..." And on the basis of the ZOE work, Tim Spector was saying that it is more likely to be Covid than a cold ...
Ah dear PMRpro. I wish to convey my condolences on your great loss. It is such a terrible time for you. I'm afraid I am infrequent visitor to the site since I got off the steroids. My apologies for my delay
All my covid vaccines were Pfizer and I never had any problems as far as I know.My only problem was the person who gave it to me never had bruises like they gave me, even my OH commented
Note my diagnosis is Stills Disease which for me manifests as RA/RD.I’m drug free except pain relief and have had 3 vaccinations AZ twice and Pfzier the third.
My pain levels and other symptoms such as fever, rash, sore throat , stiffness have been slowly increasing over the last year.
I don’t know if I had covid but just before lock down I attended several international trade shows with Chinese visitors so it’s possible my husband and I both had it in February 2020 and thought it was a bad cold.
I do wonder why symptoms are increasing now though, just age perhaps as 60 this month.
I had the same jabs as you. I too am increasingly struggling with pain but am older than you. I wish I was that age again! You’re a youngster! Have a great celebration! I was very ill in December 2019, after a big house move, and before Covid was announced. Among other things my main symptom was a horrendous cough. I’ve wondered since if I had Covid then. I took part in Covid antibody research recently and it showed I had some. I wonder (one for you Pro) does it mean I’ve had Covid?
Most of the vaccines in this case series were Pfizer/Biontech - but it also happened with Moderna and there were a lot ofrelapses as well as new onset. And as they point out, it is already well known the flu vaccine can be a trigger.
I was always certain was side effect of vaccine.....but was not mentioned anywhere at time ...tho doesn't help my PMR and GCA good to know I wasn't delusional too !! Many thanks
I think a lot of doctors aren't aware of the potential triggers for PMR - but anything that affects the immune system can be involved. Not one single thing, but over a lifetime the straws build up and eventually one breaks the proverbial camel's back. It can be illness, accident, stress of all sorts (emotional, work, physical, accident), environmental or chemical - and that covers everything incuding vaccines. Flu and shingles often get the blame - but if it hadn't been them, it could have been the flu or shingles itself. Covid vaccine - or Covid with all the attendant other risks with it ... The vaccine doesn't kill but very very rarely.
Yup - mentions it in the link I gave. People often come on the forum insisting it was the flu jab, or the shingles jab - they are the most common. But it is coincidence really, an insult to the immune system. Many of us had never had a flu or shingles jab before PMR - still developed it! There really isn't any single thing that is common to everyone. But autoimmune disorders are due to a derangement of the immune system - anything that upsets it can trigger anything ...
When you say “continue as I have for the last two years” do you mean continuing to isolate and stay away from other people? I’ve noticed people in New Zealand are becoming increasingly casual and even careless about masks, social distancing so that I feel a good deal less safe since official mandates have been removed here. And I’m weary of having to continue reminding my friends and family that I still need to be extra careful, and no, I do not want to meet anyone unless it’s outdoors. Sigh!
Both my OH and myself have noticed that some supermarkets have taken away the hand sanitizer machines.Also now my friends are saying well we have had it so why wear a mask, that says it all!!!
Yes same here. A friend who is my age, nearly 80! thinks he can go to cafes since he is now symptom free, but still testing positive, and therefore still shedding. Incredibly selfish in my opinion.
I don't exactly have a whirl of a social life anyway but yes, I suppose so. We didn't have shielding here, no support to not go shopping in person and online food shopping doesn't exist for day-to-day items. But masks were introduced very early and restricted numbers in food shops. I carried bleach kitchen cleaner and gloves and paper towels in the boot and cleaned the trolley. I don't do that now and haven't for ages - it was shown that what is called fomite transfer is minimal so surfaces weren't a great concern. I confess to feeling slightly uncomfortable eating inside at a restaurant but I have been out a few times with my daughters and cousins although eating out alone isn't a lot of fun really. I'm perfectly happy having an aperol spritz in the sun outside - not been much of that recently!!
I did have close contact with the cousins when they came to ski and caught Covid! They had an extra week in their fancy hotel (my heart bled for their isolation!) before being with me over a weekend while still positive as it turned out. And I drove them to the airport - nearly 2 hours in close contact in the car but all masked. I didn't appear to have caught it, if I did, not even a runny nose.
The rest of the time I carry on as normal - but wearing an FFP2 mask whenever inside even though it isn't mandatory in a lot of places since May 1st. A lot of others are too. An FFP2 mask worn properly is said to provide over 98% protection in terms of reducing the viral load you meet - and that is pretty critical. The numbers here are falling dramatically and even my GP said the other day she is no longer at all bothered about Covid - though to be fair she had it a month or so ago when the youngest brought it home from school. She'd escaped before - despite all the contact with patients.
And now they are suggesting that catching it is equivalent to another booster so any future infections would also be banal. What scares me more than anything else is the prospect of Long Covid - PMR is enough of a pain long term!!!
Yes I agree. All the symptoms of long Covid sound exactly like what we are dealing with already. What would long Covid be like on top of PMR? I hate to imagine.
Yes the thought of having long covid combined with out existing issues is a worry and tbh I’m not sure how much more ‘affliction’, for wont of a better word, I can tolerate.I’m still keeping distance in shops and sanitising my hands and if I have to travel on public transport will wear a FFP2.
It seems to me it’s here to stay and if we want to keep safe it’s up to us. I don’t even think I’m vulnerable but Stills is an unknown as many AI illnesses are so I’m not taking the risk.
That is why I have continued to be very very careful. I had every reason to think our particular problem could be a risk factor for long covid (I fear being more chronically ill than anything else)
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