I had PMR and on Predisone for 1 1/2 years, and off of it for 5 months. I have bad pain in all joints/muscles and much stiffness. Inflammatory blood tests are OK - CRP and ESr fairly low, and all autoimmune blood tests OK including Rheumatoid Factor, etc. and temporal Ultrasound OK for GCA.
Had a second opinion from a well-renowned Rheumo and he was persistent to get to the bottom of it, and he told me that PMR many times turns into one of 3 things: Rheumatoid Arthritis, Cancer, or Vasculitis. He diagnosed me with RHeumatoid Arthritis based on Ultrasound of hands, and new blood tests.
I had never heard that PMR frequently turns into these 3 things. Is this common knowledge that I just missed, or not widely accepted information?
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kp60
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It doesn't "turn into ...". Nor is it that frequent. What he means is that PMR is not the disease itself, it is the name given to a set of symptoms caused by an underlying illness. In a few cases it is a form of cancer, in some cases an inflammatory arthritis, not just RA, and it IS a vasculitis in its own right (though some doctors don't agree) and can be a symptom of GCA which they all agree is a vasculitis but is just further along a spectrum of the 2 presentations.
A lot of patients with "just" PMR would also be found to have GCA if they bothered looking, Some patients with GCA also have PMR symptoms.
When patients present with PMR symptoms there is a set of tests that should be done. At least one of the cancers should show up in abnormal blood tests. Inflammatory arthritis is more difficult as studies have found there are often no definitive differences between arthritis patients and PMR patients at the onset. RF is not meaningful since you can have raised RF and be healthy and have rampant RA but have a low RF.
All patients should have blood tests done at intervals and any patient who isn't responding well and reasonable quickly to pred or has difficulty reducing the dose at higher doses should be looked at more closely by a specialist rather than "just" a GP.
Learning that was a lightbulb moment for me. I responded well and quickly - then flared, so exactly as you say looked at more closely. Saw a lovely Consultant who checked everything, including CT thorax abdo and pelvis with contrast (I'd already had an MRI) 'to see if there's anything else going on' - oh I see, that's what he meant. When he was satisfied everything was clear, then he happily left me to get on with it.
Yes I've had the CT thorax abdomen and pelvis, and do have a nodule that they've been following for 10 years, that very very slowly has grown, BUT shrunk alot on prednisone, so they're not worried about it. Also have had multiple MRI's. Fingers crossed
I know I had tests for myeloma, a urine test and a blood test. I have my kidney function tested every 6 months but all other blood tests are annual now, although I can ask for them if concerned
Also from experience PMR can look as though it's morphed. During my hassles with the Moderna jab I was tossing a coin as to whether to ask for re-referral and decided to sit out the 6 m life of the vaccine. One of the questions I had was has my PMR changed. When the massive flare came at the end I had my answer, not one scrap, same dear old three clear-cut symptoms I had at onset.
If I understand you, a diagnosis of PMR is not an end in and of itself, but a symptom of an underlying problem? If that's the case I should be aggressively looking for the real culprit...and I sure have had every imaging test and blood test known to man I think - and multiple times in the last 6 months. And if it was cancer or vasculitis would prednisone help?
An inflammatory condition makes sense as NSAIDs help tremendously, but I'm confused as to how to rule out vasculitis. My legs never used to have varicose veins, and be so heavy-feeling and tender. I will try the hydroxychloroquine my new rheumo prescribed and just see by the process of elimination if that helps.
What are the best tests that I should ask for to rule out vasculitis? That is really confusing.
Thank you for your knowledge and willingness to share it.
Depends on how you look at it. The PMR we discuss here is an end in itself, the underlying cause being an autoimmune disorder due to something making the immune system unable to recognise the body as self so it turns on various tissues and attacks them causing tissue damage and inflammation. It is almost certainly a vasculitis but since it affects the microcirculation it is difficult to demonstrate. It is a diagnosis of exclusion - you exclude all the other options and then you can usually say fairly confidently it is the PMR we talk about.
If cancer and the other options have been ruled out, then accept it is "our" PMR, the only current option for management of the symptoms is pred although some doctors in the USA are using Actemra if they can get funding since it is not approved for PMR. Kevzara, also an IL-6 inhibitor like Actemra, has recently been approved for use in PMR. There is no point breaking your brain over deciding the why or how - it will make little difference in the long run but will waste valuable energy you can use far more profitably elsewhere.
yes It can drive one crazy... Since the symptoms are different than my PMR symptoms I have been perplexed. It sounds like it can still be PMR with muscular/skeletal symptoms that are in different place and not as severe as PMR. Thanks for the clarification
as well as being a problem in its own right. Inflammatory arthritis can also present initially just like PMR, only showing their true colours later, and they are likely also to respond well to NSAIDs. In fact, mostly, if all the pain responds well to NSAIDs, it must cast suspicion on the diagnosis being PMR as it rarely responds well to NSAIDs.
Yes its called s then damn covid jab affecting how our immune system works.It causes it to attack health tissue.
Doctors have no idea what to do. Watch them when your next seeing them the look in their faces tells its own story.
My phsyio spotted it by tel wheni explained my symptoms.
The clue is the speed it comes on
Where the pain is
Thefact its bi-lateral so
Both hips
Both.upper arms
Both shoulders
Early morning stiffness and pain making getting ouf of bed a challenge
Same after sitting you walk like a duck
Its PMR folks
Its 15mg of pred but if you take it in one go when you get up expect pain the next morning as your body processes it out of your system.in about 20hrs from taking it.
To avoid this I split the dose 5 5 snd 5 through the day and no pain no stiffness and no side effects day or night. In fact on a morning I wake up feeling amazing.
Good look and please talk to a doctor if your worried. I am a just a normal person who does not go with the flow i guess. I am only offering options to consider.
The Covid jab is not the only trigger for PMR, other jabs do it and the majority of us on the forum had PMR long before Covid and many had never had any jabs at all.
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Has pmr gone into remission 
3 years into PMR 
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