I thought that PMR mainly affects 1 in 120,000 people, normally people over 70, ethnic background and female. Yet down my local pub there are 3 cases including me that was supposedly diagnosed with PMR last October. I started on steroids and yes the have controlled the pain and my inflammatory levels but does anyone know if your inflammatory goes up with LTC. I was listening to jeramy Vine on radio 2 and they had 2 doctors on there discussing LTC and basically they described me. not being able to get up out of a chair, hips and knees making you crawl to the bathroom in the morning until the steroids kick in and just a mess. Last week I have just had my last Covid jab and a few days later everything has disappeared, I have no pain or stiffness in the morning and so I have started to reduce my steroids, I am now down to 7 and I am still not in any pain or discomfort. Has anyone had the same ? The doctors know very little about PMR but even less about LTC as its so new to us all. I just thought I would share my thoughts.
PMR or long term covid: I thought that PMR mainly... - PMRGCAuk
PMR or long term covid
Thanks for the information, something to think about for sure.
Interesting isn’t it. There have been a few on here whose PMR improved soon after the jab but for it to return a week or two later. As if the immune system was diverted from shooting its own troops for a bit.
NOT normally over 70 - it is said that the average age at diagnosis is 72 but that includes late diagnosis and since a very high proportion of over 75s have PMR, there are also quite a few under 70s to get the average age. The guidelines say over 50 as the age range for diagnosis but there are also patients under 50 with the diagnosis. What ethnic background do you mean? It is almost always found in Caucasians and increases in incidence the further north you go (northern hemishpere of course).
Is there evidence that the vaccine improves Long Covid? There are plenty of us on here who definitely DON'T have Long Covid who had flares after the vaccine, of various sorts. And others who had a short period of no symptoms and then it came out to play again.
On the Facebook groups for Covid there seems to be a steady stream of people saying their LTC had improved or gone post vaccination. Also, it was mention by Tim Spectre in one of his ZOE roundups that this seemed to be the case in some. My neighbour’s daughter had a massive flare of her crohns that was in remission after her jab and her consultant said the line of patients in this situation was growing. It’s all proving that it’s a lot more complicated than it seemed.
Interesting - how soon did the effect set in? Did they say?
No but I know it was well within the month. Out of interest she had also had Covid (confirmed) last summer.
But the Covid itself didn't make the Crohns flare?
Not at all. She was quite poorly with fatigue and breathlessness but didn’t require intervention. Felt rough for a couple of months
It is a very peculiar disease ...
You don't say.🤪😂
Covid I meant - not PMR. Though it is too
😂😂
PMR is much more common than you suggest - more like 1-2% lifetime incidence (though F>M). With increased stressors and immune stimuli over the past 18 months, it isn’t at all surprising that “there’s a lot of it about”!
I am sure it is more common than officially stated. I don’t know 120;000 people and I know 8 people with PMR.
😂😂
It wouldn't surprise me at all to learn that at least some of the forms of PMR we see (there seem to be several kinds judging by the great variety of symptoms and reaction to medications we hear about) are the result of an earlier infection, possibly one from years before which predisposed the person to develop PMR in later life. There was a brief discussion of this in relation to the Epstein-Barr virus (causes nononucleosis usually in young adults) a few weeks ago. So if Long Covid results in a form of PMR, or causes PMR-type symptoms as part of a syndrome, I would not be surprised. It does seem that people with Long Covid sometimes do begin to feel better after the boost of immunity given by the vaccine. More study needed. Quite fascinating really.
the result of an earlier infection, possibly one from years before which predisposed the person to develop PMR in later life My previous rheumatologist said she'd encountered "so many" PMR cases in which the husband or wife had also had it years, or even decades, before.
I was diagnosed with PMR last May but scans showed atypical inflammation and bloods normal. I am convinced looking back I had Covid. I have been reducing steroids relatively rapidly with no symptons - now on 1mg - I have also had 2 covid jabs. I am sure there are several cases of LTC that have been diagnosed as PMR. Last May muscle pain/inflammation was not recognised as a Covid sympton, it now is.
That sounds exactly what I have had but my doctor is still adamant that I have PMR do you know what you inflammatory level were at the start ? and how quickly did you reduce your steroids as I am only reducing by1 mg a month and its taking forever. Thanks for your reply I know or think I am right its just to commen for 2 of my mates excluding myself that use the same pub to all come down with PMR and we all have the same symptoms
He needs to understand that PMR isn't the actual illness/disease/disorder: it is the name we give to a constellation of symptoms that are caused by an underlying illness. It may be the herald of an inflammatory arthritis, due to cancer, thyroid problems, infections ...
emedicine.medscape.com/arti...
All other options must be ruled out before PMR is left as the most likely option. It can be the symptoms of a previous infectious illness. Like Covid ... Much more likely that the 3 of you had Covid than have developed the PMR we aim to discuss here.
Three of you all together. That *is* an unlikely coincidence. I take it none of you were sick enough with expected covid symptoms to be tested?
Well it is not unlikely come down and see ,this is what I am saying why the doctors keep telling us its PMR and not LTC, we have all been prescribed prednisolone I started on 25mg and I am down to 7mg Lully is on 20mg reduced to quickly and had a massive relapse and he is back up on 25 mg and Gary is on 15 but has very bad vision and I am worried about him. They have been tested and do not have covid but I had it in November, Just don't get it really
On vacation in the south, the winter of 2018, a friend and I went to New Orleans for a day trip. We also met for dinner a couple times. She was dx with PMR in July…..I was dx in January. A mutual friend had symptoms of GSA but after biopsy told she didn’t have it.
The GCA Facebook group I belong to has been flooded with applications to join since the beginning of the pandemic. It is weird
Been a lot of new members here too - and one role is to get feedback on symptoms etc when you can't get near a medical person
I am 71 and developed PMR a few weeks after receiving my first jab (AZ). Probably just coincidence but who knows really?
I am waiting for repeat blood test results and seeing a rheumatologist on Thursday but the same appears to happened to me. Starting 5 days after first AZ. I know of another local case. Man aged 81 deteriorated suddenly after AZ. Diagnosed as PMR after blood tests and MRI. Improved fast on steroids.
As we keep saying - there is no single cause of PMR/GCA, and probably many other autoimmune conditions, but it is thought to be the result of a lifetime of insults of various sorts putting stress on the immune system until eventually SOMETHING is the trigger that overloads it and it goes haywire. It may be illness, surgery, emotional stress, envirnmental or chemical stress but they all mount up until something tips the balance. For some it is a bereavement, for some the flu or shingles vaccine - or the flu or shingles themselves. Or Covid seems to have been pretty instrumental in cause a/i problems.
I have a similar situation after AZ. Swelling in wrists and face immediately after AZ first shot. Flu like a couple days but on day 6 got really ill. Elevated heart rate, extreme weakness, nausea… muscle and joint soreness, hot inflamed neck shoulders arms… prednisone helped with extreme symptoms but 8 weeks later still have same but much more mild symptoms (off prednisone). I also had the super sore eye & then vision issues for 3 weeks but finally got relief from a antihistamine eye drop…. Maybe that will work for the friend … not sure why no one suggested it earlier . I have never had anything like this before.
Hi my bloods never showed signs of inflammation. Scans did show some but not in typical places. Dropped by half a mg for 6 weeks but recently dropped by 1mg and am fine.
LTC?
It's funny you should mention that your symptoms subsided after receiving the vaccine. I didn't even think to attribute the decrease in my inflammatory markers as a possible result of the vax. My second shot was March 4th, by March 11th my SED and CRP were back to where they were four years ago before PMR. I was able to decrease pred from 2mg to 1mg, now trying to reduce to half. Wow, maybe you're onto something big!
All I can tell you is that I was still getting up in the morning like a piece of wood and needing help with getting dressed and almost everything , after my first jab I was a different man and had my blood tested and my doctor said my blood levels were back to almost normal, I asked him about LTC and he basically thought I was being rude and accusing him of miss diagnosis .12 weeks later and my second jab my levels have returned to normal and not an ache insight,
I just don't understand why the doctors will not listen to me and my mates that are all in the same boat. Google Greg Norman the golfer for LTC or listen to Jeremy Vine blog when he had some doctors in on a LTC debate and people were phoning in its un canny how close LTC and PMR are
This is amazing news! BTW, what is LTC?
Long term Covid
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