So I was diagnosed in July 22, started on 15mg now on 5mg 13 months later, with no relapse, quite a few problems along the way, I’ll save that for another post.
My intrigue is as the title says, I’m not jabbed and got Pmr diagnosed about 2 months after finally picking up a bout of Convid in May 22, the symptoms started about a week or 2 after I’d recovered from Convid and worsened for 6 weeks prior to diagnosis.
I’m convinced that this was the trigger for it, as before this I was well and moderately healthy.
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Spazzy55
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My husband and I were downsizing and getting a house we’d lived in for 30 years ready to sell. We were moving to another state. I was overworked, probably not eating healthy, drinking too much, suffering from chronic sinus infections and dealing with an elderly mother 2000 miles away needing nursing care.
So, I’d say, type A personality with lots of stress, chronic infection, and bad habits and a genetic predisposition to autoimmune disease.
I haven't got PMR but Fibromyalgia and still awaiting gene testing for HLA-B27 for ankylosing spondylitis. However, i can say that my rheumatologist stated that my immune system/nerves went into major overdrive. This particular event that triggered 1 of my after hour trips to emergency doctor was 2 days after my 2nd Pfizer covid injection. I'm convinced it's connected, perhaps not the actual injection but my body's reaction to it.
Like many others my PMR was triggered by a long period of relentless stress and bereavement. The nature of the stress was inescapable. When it eased a little the disease began.
same here SJ. I was trying to help a dear friend who was going through a period of paranoia linked to Alzheimer's. This meant 4 or 5 long phone calls per day, plus my husband having to get dressed and go to look for intruders in the middle of the night. My poor friend was terrified of everything, and I dreaded every phone call. All this changed dramatically one day when she was taken into hospital and I went from high stress to none. A few weeks later my PMR symptoms began.
absolutely nothing...I ate well, had exercise...a good clean life. Never affected by covid jabs. But we are all different. However, I do think we are looking at something very complex so there can be a collection of triggers over many years...and then a final straw....
I can't think what my final straw might have been..perhaps just a virus that was floating around (not that I had an obvious infection)
If I were to seek an explanation I would be eyeing up decades of unrelenting stress in life generally, years of night shifts and one of my babies not sleeping for 6 months. An impossible brief in a new job up to diagnosis and my horrible father-in-law living with us. A condition that affected my white blood cells all my life such that I went from one mild infection to another probably had my body in a state of frequent intermittent inflammation. Chemo and a type of hormone blocker that gave me widespread inflammation in my blood vessels I think introduced my body to the idea of GCA. Covid x 4 including long covid didn’t do a thing to cause a relapse. 3 Covid jabs that caused increasing neurological issues didn’t either. If it wasn’t GCA it would have been something else.
Lots of evidence to support that too, but it’s too awkward to address because night workers are needed. Money isn’t going to be spent on increasing staff to allow nap breaks or shorter stints.
What I don't understand is why they stopped the night shift blocks. My daughter has no life because of the switches from days to nights messing up her sleeping every week or two,
She'll get 3 nights and then switch to days but varying times for about a week to 10 days max and then 3 nights again. Crazy - and if the NHS doesn't know the risks of shift work, who on earth does!!!!
My husband used to do 2 days on (12 hour shifts,) two days off, 2 nights on 2 nights off.....he never knew what day it was, and used to get about 4 hours sleep if he was lucky.....he nearly had a breakdown, in the end they wanted voluntary redundancies, he was first in the queue....
Covid on Xmas day 2022, first and only time that I’ve had Covid, fully vaccinated and boosters, very ill with covid for 3 weeks, then followed a long period of thick Green phlegm for next 5 months, during which I had 4 weeks of high dose antibiotics, with zero effect on the still thick green phlegm. Commenced symptoms of PMR early March in right shoulder, treated with Co-codamol, symptoms spread to other shoulder, back of neck, then my hips, hands affected during April. Suffered bad PMR symptoms for 2 months during March and April, finally diagnosed early May, 15mg Pred reduced pain within a couple of days, raised to 20mg after 2 weeks, pain gone, thick green phlegm took another 6 weeks to become clear phlegm, during this period Doctor sent me for a CT scan, thorax and abdomen, which led to and ultrasound on my kidneys, which led to a triple phase CT scan on my right kidney, which resulted in a suspicious growth of 3 cms on my right kidney, following discussion with urinary consultant, we agreed observation in 6 months time, tapered in two stages so far July 1st to 17.5mg and 1st August to 15mg. Most days a short period of clear phlegm, not so thick by now. (I have never suffered with such thick phlegm, except with very occasional colds)
I am convinced Covid triggered my PMR, I plan a slow taper, considering 12.5mg from 1st September and hopefully 10mg 1st October, then 1/2 mg reductions monthly thereafter, until 6mg, the 1/4mg monthly, during which I’ll be preparing myself for the adrenals period of suffering.
My PMR started after six months of physical and emotional stress - a total hysterectomy which did not go as planned followed by a bereavement plus looking after my ailing elderly father and having a long work commute and a demanding and selfish boss.
Covid is a nasty, sneaky virus. A dear friend was infected last summer and went on to develop transverse myelitis which sadly led to loss of life. The post mortem said this was definitely caused by covid. It is easy to blame a vaccine because it can make you feel poorly but the vaccine is like when oil seed rape is in flower and people develop an allergic reaction and blame the rape flowers because they are so obvious. However the pollen particles on rape are v large and don't travel much more than 50 meters whereas tree pollens flowering at the same time are often very fine and really travel. We cannot underestimate the ability of covid to do us harm still in spite of the miracle of vaccination.
Very healthy other than epilepsy which was well controlled., had first covid vaccine came on 3 days later ......for me no question what the trigger was ..
There is no single cause that finally triggers PMR - everyone has a slightly different story to tell and inevitable there are some who have the same apparent final trigger. However, it is recognised that Long Covid and PMR can have many commonalities.
Several vaccines are associated with PMR developing, especially the old shingles vaccine, Zostavax, and flu, but not in everyone and now there are studies linking the Covid vaccine and PMR. Infections are commonly the final straw - but so are life events, operations and trauma.
If you spend your time worrying about what it was and why you will be consumed by it - not worth devoting the energy to it.
I am not sure what triggered mine but I have it and have learnt to live with it so that is all that matters to me. I just hope at some stage it will go!
I blame mine on the Covid vaccine. I'm absolutely not antivax but I believe the vaccine triggered it in some of us unlucky ones. Trouble is no one knows - yet, at any rate, do they?! And obviously no one can go back and see what would happen if we didn't have it!☹
I read some research, which I can't find again, that found that a high proportion of GCA patients had suffered a life changing event during the two years prior to the onset of the disease. (Sorry this is very woolly)
However, it confirmed my feeling that my husband having a stroke and all the anxiety, uncertainty and stress involved as he recovered was the basis of my being susceptible to some illness. I was diagnosed with GCA 2 years and 6 days later. But I'm sure there are lots of different possible causes and triggers.
My case sounds almost identical to yours. Had a mild case of Covid in May 2022 and shortly thereafter started with pain in arms, hands, wrists and legs. Eventually diagnosed with PMR.
Yes, my case is identical also. Got Covid September 2021, the Delta variant, and within 2 weeks had symptoms of GCA and PMR. It took 2.5 months for a correct diagnosis, during which time I was mostly confined to bed with terrible pain, headaches, jaw pain when chewing, fatigue, etc. The only time I felt well in 2.5 months was when the doctor experimentally put me on 60 mg Pred. for 5 days. She spent months ruling out every other possibility. I have read that one virus can trigger another, and for me it was Covid triggering GCA and PMR. Thankfully the GCA is over and I'm tapered down to 4 mg. Pred. It is true that knowing why we got it doesn't change our present situation, we just have to deal with it as it is, but I agree it's a question that we would like an answer to!
Oh yes, you are correct PMRpro! What I've read, and believe it to be true in my case, is that the COVID virus triggered the GCA and PMR. Autoimmune conditions somehow brought on by having the virus.
Hi, think I'm probably an odd one here, no surprise there then. I've no idea what set my AI system into alert mode, suspect I actually had it for a good few months before diagnosis. No particular event happened to set it off. It arrived during the pandemic but before I'd had any vaccinations or even Covid. The Covid/flu vaccinations gave me no adverse effects. In reality the why doesn't concern or fuss me, Pred has/is sorting it and although it's been three years already I've had no real problems or side effects on the way.
Well I can certainly relate to you Spazzy55 as I too recovered from a nasty bout of Covid then about one week later I was suddenly in debilitating pain with p.m.r.After months of misdiagnosis I was finally treated with prednisone.
When I saw an specialist doctor he said it probably wasn't triggered by Covid, but honestly I think it was.
Anyway it's truly horrible but good luck on your journey.
Mine started a week after recovering from COVID. All right now, I am going to tick many people off here: but it's must be kept in mind that all the problems people mention, and some assign as " causes " are only Triggers, and not causes! One must have the genetic predisposition to an auto immune disease in the first place. I would bet if many of you look deep into your family history you would find one form of auto immunity or another. In my family there's a sister who has Hashimotos, another sister who has alopecia and IBS, and my mother who had graves disease. Yes, even stress can trigger PMR, but if it caused it all the air craft controllers, inner city police, emergency room doctors et al that are in high stress jobs would be screaming for prednisone! As far as that goes I would bet that genetic predisposition is probably responsible for almost all of the disease, of course this includes cancer. Human nature likes to find causes, especially they like to assign something the person did to act as a cause. The sad fact is until they get a better handle on the genetic components that predispose one to certain diseases we are all just playing Russian Rolette.
Re genetics. Am a big believer on DNA as a predicter—While I and doc have attributed my pre-diabetes to being overweight, and then steroids kicking me well into diabetes, it is also true that all three of my brothers with the same father as I have diab II and none were obese and none are on steroids.
I think my PMR crept up on me due to stress at work. My last 4 years were particularly hard and I retired without a backward glance. Over those years I developed difficulty raising my legs to get in and out of my car, raising my arms to pull off jumpers, neck and shoulder pain and stiffness when getting up from a prolonged seated position. I put all this down to getting "old". But GCA/LVV developed next and dx was eventually given (see bio).
I don't think it had anything to do with Covid (which I never had) or with the vaccinations of which I had 4 with varying degrees of discomfort but no major problems. The pain and stiffness had already started before Covid came along.
I'm sure genes are also a major component. I have scalp psoriasis and a history since childhood of unexplained allergies (rashes) so I reckon my immune system has always been a bit dodgy and the stress at work was the tipping point.
It's very interesting to read all the stories here. There would seem to be a family trend. As far as I know, no relatives have ever been diagnosed with PMR. But then not everyone who has it gets the right diagnosis.
" Over those years I developed difficulty raising my legs to get in and out of my car, raising my arms to pull off jumpers, neck and shoulder pain and stiffness when getting up from a prolonged seated position"
I had the symptom of early morning stiffness for I don't know how long. Years and years. When given physio exercises for a specific problem (back) and told to do them twice a day, including first thing in the morning I wondered how I could possibly manage, although I did. That would have been ten or more years before PMR. However when I eventually got a PMR diagnosis after about 14 months of gradually worsening symptoms, the pred I got for that also got rid of my morning stiffness, and this has never returned. So did I have PMR brewing for all those years? I've heard that the Epstein Barr virus can cause problems many years later and did have mononucleosis (aka glandular fever in UK) when about 20, which in retrospect made me ill for quite a long time although I thought it was just repeated new colds etc and apparently EB causes some cases of mono, So I wonder if this, or maybe something similar, is the primary cause of my PMR which like many others I believe was triggered by stress. And yes, agree about genetic predisposition. My first cousins, except for the adopted one, and I seem to represent an array of auto-immune conditions.
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