Maybe I’ve missed it, but I haven’t seen much discussion regarding what people think may have triggered their PMR. I realize I likely have the genetic make-up that allows my immune system to flip into overdrive, causing PMR. But I believe it doesn’t just occur; there is a triggering event. Clearly to me, the shingles vaccine I received 4 days before onset of my PMR was one, and strong emotional stress is likely another. I suspect exposure to a herbicide could have been one for the second episode I had. Does anyone else intuit a trigger responsible for signaling their immune system to go into war mode?
Precipitating factors: Maybe I’ve missed it, but I... - PMRGCAuk
Precipitating factors
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Joblow
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PMRproAmbassador
For you it IS obvious - because PMR is one of the adverse effects listed for the first shingles vaccine! Which is as good a reason as any for not accepting your GP's invitation to have the Zostavax vaccine it seems to me. The jury is still out on the new one.
However - the final trigger for most people can be anything: a lifetime of insults of all sorts to the immune system pushes it to the edge of a cliff and one final thing is the straw that breaks the camel's back sending it tumbling over the edge. Anything that may affect the immune system may be involved - infections, accidents, chemical or environmental things, stresses of any sort whether physical, emotional, mental. A vaccine, as it was for you, but it could equally be the flu vaccine - or the flu it would have prevented. There is some role for genetics - in that having Scandinavian heritage seems to make it more likely that the set-up that upsets the balance of the immune system will actually go into action because it doesn't always - identical twin studies don't show that with autoimmune disorders.
in reply to PMRpro
Pmrpro -Have you got a reference for a twins study TO HAND. (Sorry got no italics. Dont want you to add it to a list of things to find!) I can find them myself if not.
Joblow (i always read your name wrong) I could probably identify 10 different things that might account for joining the wacky immune system club. I think a lot of discussion occurs within threads about people's history and potential "causes" of pmr/gca.
When I reacted to the shingles vaccine (2009)it was not listed anywhere as a possible adverse effect.
And sorry for being the new person rehashing previously covered discussions.
in reply to Joblow
Theres always someone new who needs to know this so never worry about asking a question. I learn something from just about every question asked.i.e twin studies.
I was trying to say there may not always be threads about a subject that you can search and find, but within a thread people consider these kinds of questions.
I think Zovirax is acyclovir. Medication rather than immunisation.
You are quite right - Zostavax! Suitably ammended!
PMRproAmbassador
I forgot to say in the other reply - it is discussed quite a lot on all the forums. Every so often someone new arrives and decides they want to do a survey about causes because doctors don't bother. The same pattern evolves every time - and comes to the same conclusion that it is next to impossible to identify a cause because it is multiple triggers and the chances of identifying two the same is small enough - one common to eveeryone is impossible.
pmr-gca-northeast.org.uk/in... follow this link to the:
International Survey which has been running since August 2008.
The survey is totally anonymous and the information accrued can be viewed free of charge to anybody. We hope this survey will aid future research projects.
It takes approximately 10 mins to complete the survey.
and you can also follow the link provided to see the ongoing survey reprots.
GCA Survey
For sufferers of GCA there is also a survey at the Marijke Stichting Foundation Netherlands.
This survey relates specifically to GCA.
Hi Joblow. As others have mentioned, there seems to be a multitude of factors that may be correlated/causal re PMR.
For me i believe it was connected to the previous 2 months where a number of (good) stress related events occurred (marriage, retirement, selling/buying a house, moving). I also had a really nasty upper respiratory infection that landed me in emergency the night before we moved. All combined too much for my immune system that went wonky and PMR emerged. After reading other threads on this subject, I’ve made the choice to never get a vaccine or flu shot.
As much as it is helpful to posit why our conditions occurred as to avoid these factors in the future, we may never really know, and after a few months I stopped focusing on “cause”, and began focusing on management of the condition and healing. These were things I could control and more “concrete” which is what I needed.
Thanks for you’re inquiry. Hopefully responses can help others.
My thoughts are that from 2016 until onset of pmr I went through several stressful situations; an extension to my house, 4 close friends in hospital needing visits (different hospitals), death of 2 of them and keeping news of deaths from other 2 due to their poorly state. I feel that my sympathetic nervous system went haywire and hasn’t yet settled down. And then once pmr was diagnosed and treated successfully I reduced pred dose too quickly and attempted far too much physical activity and caused a flare. Rest, I realise now is of paramount importance - not easy when you have been a very active person - and dead slow reduction of pred doses the other very important factor. Hang on in there Joblow.
I believe my PMR was brought on by the stress of my daughter and her there teenage children and barking dog moving in with me.....followed by a UTI that went sepsis and landed me in the hospital for three days....followed by the former shingles shot which I got a terrible reaction shortly after the shot. My conclusion is that as we get older our bodies and mind can only take a minimum of insults to them.....I went into overflow
I believe mine was triggers by the death of my wonderful son in law and seeing my daughter so much distress and not being able too make things better for her
Although I did have pains in one part of my body for a long time before diagnosis after he died it went into overdrive everywhere
I had my husband home from hospital and looked after him night and day for 3 months until he eventually died, at home. The stress was appalling, no sleep and like a zombie. Thought all the moving him had made my arms and legs ache, then it got much worse and I finally went to doc and was told pmr. He died in the January and I was diagnosed in the February. Without doubt it was brought on by mega stress.
So sorry for your loss x
Well, a few days before my PMR started I watched a BBC programme, February 2018, on stepping up the exercise in the gym. And I did. And I am sure being silly in the gym precipitated my PMR.
Hi Joblow, I had a a flu vaccine in 2017 and it was all downhill very quickly from there. I always thought I had a really strong immune system but the particular virus introduced must have been overwhelming for me.
Looking back I had pain in one jaw over the previous couple of years that disappeared once I was treated for the PMR and GCA. Perhaps it was lurking in the background there I don't know.
I can't say anything triggered my PMR, except genetics. I'm not a really stressful person. It just "happened".
I’ve read virus or car accident - may be it is best not to worry about the cause - just concentrate on getting better
I am sure stress caused mine.
Yes a knee replacement, led to phsio going against dr 's advice took off dressing, it led to masssive infection. 6 months of antibiotics which led to the beginning of PMR, that's what started me off 10 yrs ago
in reply to VAl4266
I hope physio got their wrists slapped and apologised to you.
I think having a nasty fall and damaging my knee , the stress of moving house and having builders in brought on my PMR , but my son and my nephew have autoimmune diseases and my sister had PMR 10 years ago .
About a month before I became ill I fell down the stairs and was quite shaken up and bruised. I never felt quite well after that. I feel sure that this was the cause of the onset of my PMR.
Your reply reminded me that I also had slipped on the stairs and bounced all the way to the bottom on my butt, forearms and back. I was covered with technicolor bruises.
But that happened last May, 4 months after PMR set in...
PMRPro's post says it all but I can't resist adding my two pennyworth - the rheumy I was referred to - a very conventional, obeying-the- rules kind of medic - told me that 'they' didn't know what the cause of PMR was but a number of his patients had developed it after the death of someone close to them. For myself, *as long as I can remember I have had the ability to become stressed over anything from tiny 'challenges' - catching the train, finding my keys - to huge things - illness of friends, the state of the world, the villainy of the mainstream media! PMR arrived after 8 months of particularly intense stress, followed up by a period of particularly hot weather that flattened me, and a 'holiday' in the UK which I arranged for myself and had a myriad of small challenges in it. All this time, I was suffering various kinds of pain in my hands and arms, including a frozen shoulder which had, however, more or less gone by this time. The dam finally burst a couple of weeks after I got back. Don't know what the absolutely final trigger was - as with many another person on this forum - it arrived overnight - possibly it was something over-salty, or over 'hot', or even, I guess over-sweet, that I had eaten the day before. I'll never know.
So, I think you are absolutely on the right track.
*For me there is a link with my 'research' into Asperger's Syndrome - which I am now convinced I have - but that's for another forum!
I believe mine was an adverse reaction to Aldara cream I was given for a basal cell carcinoma. It started 2nd day of treatment. I do not think I have such a severe form of PMR as some on the forum , for which I am grateful.
I too had the shingles vaccination then contracted PMR. did some research and found a warning from the company that manufacture the vaccine stating that a serious adverse effect of the vaccine is PMR so I know how I contracted it.
Gosh..haven’t thought much about this at all..at the time my GP asked if I’d had a virus..I hadn’t..but looking back at the year,(2016) it had been quite stressful.Knee surgery in January,my husband had emergency appendix surgery a few weeks later,followed by his heart valve surgery 6 weeks later,coinciding with a visit from my son,daughter in law and three children arriving for their hols with us from America. My PMR didn’t kick in till November.
I think another stress related incident!
I have given up on analyzing cause - multiple factors, and now concentrate on treatment, tapering prednisone ad what does, and could possibly, cause "flare ups."
Hi jo (?) You might find this link interesting...
health.harvard.edu/diseases...
Joblow in reply to
Yes, it is Jo. Hope this doesn’t mean your name is Poop😬! Thanks for the interesting link. As I told my rheumatologist, if I were younger I’d go into immunology research- it’s fascinating. His reply was that I was ‘preaching to the choir ‘!
in reply to Joblow
😂😂😂
It is interesting and gathering the info helps you at least what may be happening to us all.
I took care of my dying mother for over 7 months. Maximum stress. Very little sleep. She was a cold and critical person and our relationship was not good, but she really had no one else to help her. I clearly recall thinking the stress would kill me if it continued much longer. Within months of her death I had PMR.
6 months of family stresses caused mine, I’m sure. I had always been perfectly healthy beforehand then daughter’s marriage broke up, step mother died followed by husband being taken unexpectedly into hospital then I ended up in hospital 10 days after Hubbie was discharged.
My PMR came completely out of the blue. I blame it on my ancestors raping and pillaging their way across Europe. Okay maybe not the pillaging. I don't know about the shingles vaccine. Isn't it just given to old folk at the age when PMR is common? It would be on the package insert in way 'may contain nuts' is on many foods.
I always assumed the pillaging was to fund their lifestyle?
It is on the PIL I think - and certainly in the manufacturers website documentation.
Mine came on shortly after the flu vaccine
Me too though I didn't make the association till reading this discussion
Unrelenting stress with me, a situation I couldn’t escape.
Unrelenting stress like Sheffieldjane led to a minor outbreak of shingles, for which I took acyclovir and was able to remove the source of stress. Just as the shingles ended after about 4 weeks, I got strange stiffness which was never diagnosed as PMR but led to GCA about a month later. I felt that stress caused shingles caused PMR caused GCA, but cause and effect might not have been as simple as that. Shingles and PMR were both minor, but GCA was pretty bad.
Both times I began having PMR symptoms it followed an allergic reaction to a "floxcin" antibiotic. The first time "Ciprofloxin" for a bladder infection. The 2nd time it was a preventative antibiotic ophthalmic "offloxcin" drops during Cataract surgery. Spelling may be a little off and these are US names. Both antibiotics are said to possibly increase risk for autoimmune diseases. That said although I have the fatigue, severe bilateral shoulder and hip stiffness and pain, my symptoms seem to last only a few months. The symptoms also seem to be more sporatic after a few months, good days/bad days. My current rheumatologist isn't sure it's PMR because my GP didn't do a CRP before starting prednisone. Sed rate was normal. The Prednisone was a miracle. Symptoms were gone in 12 hrs. I was on it for 4 mos. I'm off the prednisone now after a too rapid taper by my rheumatologist. My hips and shoulders are not to bad most days if I don't overdo. The fatigue I blame on being off prednisone about 6 weeks following a 6 week taper from 7 to 0 mg. (Dr.'s order. ) Had some pretty low BP. I don't plan to go back to her, but GP is also not very knowledgeable. Really have to pace activities, but I believe I'm doing well. I feel so fortunate that if it is PMR, I seem to have a mild form. Hope to stay away from Drs where PMR is concerned and count my blessings.
I’ve taken a lot of Ciprofloxacin over the years for UTIs. (But looking back, not close to onset of PMR.)
Wish I hadn’t taken Cipro, though, because of its known problems with tendons. In fact my current UTI is being treated with BACTRIM, a sulfa drug, because my doctor’s new UTI protocol puts Cipro at the bottom of the list.
With PMR also affecting the tendons, I’ve gotten a double whammy...
I've taken it a couple of times. Once was while I was on methyl prednisolone and it caused achilles tendonitis, cue 9 months on crutches! The GP said "Oh, I've heard of that but never seen it before..."
I understand new guidelines say none of the quinolones should be used for banal infections - about time too.
"My current rheumatologist isn't sure it's PMR because my GP didn't do a CRP before starting prednisone"
If that is his excuse he's a pretty poor doctor - whether the ESR and CRP are raised or not is pretty immaterial - they are normal in a fair proportion of patients. Or - which is possible I suppose - quite a few of us don't have PMR. Except our symptoms WERE undoubtedly PMR except for the raised blood markers - since PMR is the name for the symptoms, not the actual underlying cause.
I think we should campaign for the name to be changed: to pred-responsive polymyalgic syndrome. The underlying cause needs to have the real nasties ruled out - but if it responds to pred, then that should be accepted and used as the basis for management.
Mine came after a tooth infection, then a pneumonia vaccine shot recommended by my GP since I had a touch of it a year earlier. Never took a flu shot cause it got me sick, like the tetanus shots they made me take each season in my early years as a Lifeguard.
I said above I got PMR after flu jab but I had a pneumonia jab at same time.
Have just had mt first shingles vaccine and have been relatively OK, but having had a chest infection for the last two weeks have had a couple of bad days since. But having seen a couple of friends with shingles, in their 70s, think it a good thing to have had. As for precipitating factor for PMR, who knows? We are all different creatures. Mine may have been repeated chest infections when younger, and a misdiagnosis of osteoarthritis. We just have to get on with it, difficult as it is, and people not understanding how low it can make you feel when the steroids make you look pretty good.
I’ve had this twice now, first time ten years ago no one diagnosed it asPMR, said it was related to u dear active thyroid...but in the days before I got the symptoms I had a strenuous week at work, felt worn out, had a few days off and BANG..only six months that time....this time I think it had to do with more stressful events and hard physical work and a bursitis type injury to the left shoulder suddenly spread across the back to the other arms and shoulder, felt crappy, this time I figured it was PMR, my Dr. agreed and the initial dose of pred worked like it should with PMR...I usually have a strong immune system, rarely get colds or flu, I go years without a cold, but this has been my only health related condition that’s put me down for months, now two years...I worked in millwright type work and around many very strong chemicals requiring protective clothing and breathing devices often...plus welding and cutting torch fumes...
Mine was statin induced. Began on statins and within days started with symptoms and stopped taking them. Probably less than 2 weeks total on statins. Within 3 weeks I could not even turn over in bed. Neurologist ordered a steroid pak saying maybe it will go away as fast as it came. It did! It was a miracle but when the 6 day pak of methylprednisone was over the pain came right back and I was sent to a rheumatologist who diagnosed PMR. It has been 6.5 months since onset and just tapered off the methylprednisone. I am hoping that the taper wasn’t too quick and I don’t flare.
Interesting that your statin-induced PMR responds to pred. I have said for a long time I think one version of PMR is reactive and may not last very long but longer than the few weeks statin-supporters claim it does.
Does statin induced PMR not always respond to prednisone? Mine was not the normal Statin induced aches and pains. I had classic PMR symptoms and very disabling -couldn’t get out of a recliner, much trouble dressing, had to fall onto the commode etc. and pain was horrific. I agree with you and am hoping correctly so that mine is reactive and clears far more quickly.
I suspect Donald Trump has something to do with my getting PMR! I can’t think of any other stressors around that time.
LOL
Hmmm. I have had a dental issue for the past couple years. There was an encysted abscess at the base of a tooth with a broken root that was mostly asymptomatic, but I figure it was abcess-ing before and during PMR. Just had it pulled April 1, and my stiffness & aches have been declining this month. Coincidence? Maybe.
To be honest, I give Trump as my reason for most problems of weight gain and anxiety the last 3 yrs!. Never know what craziness or misery he'll create!
I do think a variety of stressors stimulate the condition. 1st time I had the bladder infection, then the allergic reaction to the antibiotic 5 yrs ago. This last year, no infection, but a allergic reaction to the antibiotic eye drops.
My Rheumatologist also said I don't have PMR long enough. She's kind of stuck on it lasting at around 2 years. From reading here, I can see a lot of you have had it much longer. I don't think she has ever had a real PMR patients but has read info on it. I do know that my symptoms are severe for a only a few months and then I have periods when it's mild. It's now April and my symptoms are mild if I don't do hard physical activity. I am hoping PMR is winding down. My symptoms began last June. That is not what most PMR patients experience. I don't understand why my experience is shortened, but grateful!
PMR can last from months to the rest of your life. And it gives the impression that the underlying autoimmune cause cycles in activity - like many other a/i disorders. It does that over an indeterminate period but mostly rises to every decreasing levels of activity over time - and eventually dies away altogether.
Some people are able to reduce their dose of pred quickly and discover they can get off in a short time - but they also seem to be at a higher risk of a relapse later. Which suggests to me they were able to get off the pred while the disease activity was low but then it ramps up again.
I really have to thank you. Your understanding of the condition and the vagaries associated with the disease process and treatment have made the lack of medical knowledge
I had vague PMR syptoms for ten years. Then a sudden flare was caused by doing too much physical work (gardening, greenhouse base construction) while suffering from a heavy cold. Then the next day i woke up vitually unable to move my arms and legs, this carried on for three weeks before I was diagnosed with PMR, followed by a long stuggle to get off the steroids. So I'm no expert, but my advice is, do not do to much if you catch a cold.
It is always a shock, when it suddenly roars back. Being unable to sleep on either side is also a drag, since that's my usual position.
Talk about precipitating factors, my friend's PMR lasted for 3 years, during that time both of her sisters came down with it as well! She's in her 60s, but I think her sisters are older. To me that speaks to the genetic aspect.
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