Residual PMR pain whatever the dose

Since 25 mg prednisolone leaves me mild pain, I'm rather reluctant to move to 30 mg though, perhaps, I should.  As for strenuous exercise, I guess I'll learn the hard way.

I too am all for trial and error -  without GP or specialist. only Dr Google.  As for dormant muscles, I have read that exercise helps PMR sufferers.  Either way, heavy exercise has not aggravated my PMR symptoms because I'm fine the day after.  I too have found that when PMR flares up, 4 days at a higher dose sets to right.  A long way to go? 

I Googled claudication and vasculitis, and concluded that neither is integral to PMR.  Both are likely part of GCA and, of course, PMR sufferers may have other conditions such as VPD.  Apparently, clinically occult vasculitis is seen in up to 20% of temporal artery biopsy specimens in patients with PMR who do not have features of GCA. 

Hopefully, PMRpro can clarify this further. 

I have both GCA and PMR and yes, claudification and vasculitis is GCA associated. It’s build upmof pressure in the blood vessels in the temporal arteries. Nasty.

My diagnosis is PMR - but I had both thigh and jaw claudication with scalp pain in the first years. The jaw claudication and scalp pain went on its own, the thigh claudication didn't go until I was on pred and it took a while. It was probably the most painful and debilitating part of my PMR - stairs were hell! It appeared suddenly at the end of a summer where it had been increasingly difficult to do step classes - in fact, I had to stop doing them. Then I went into the gym to prepare for the winter ski season - and 1 minute on the crosstrainer caused such incredible pain I had to stop. I thought I was just unfilt - despite knowing perfectly well what claudication is, I worked in a vascular lab and it was my husband's specialist field! The GP didn't catch it either.

Claudication is listed as a typical symptom of GCA so I don't know what you have seen. It really is impossible to say where PMR finishes and GCA begins - after all, PMR can be due to GCA but it can also be due to less specific LVV. PET-CT doesn't show the giant cells, just the inflammation. GCA sometimes fades and leaves other signs at biopsy. And only the temporal artery can be biopsied easily which has led to a LOT of misapprehensions.

I think the likely truth is that many of us with "only" PMR symptoms actually have LVV (large vessel vasculitis) which may or may not be GCA (there are other forms). It all depends on which arteries are affected - and they just don't look closely enough. I know several people who struggled to get a PMR diagnosis - who lit up like christmas trees when they had a PET-CT.

One lady was sure she had GCA, a world-reknowned GCA specialist told her "The TAB is negative - so you definitely don't have GCA..." - which even we know is rubbish. She persisted because she felt so ill - and he sent her for a PET-CT. He didn't have the courtesy to tell he he'd been wrong himself and she actually had LVV with the aorta being severely involved, he sent a minion with a high-dose pred prescription and "see you in 6 months". She was still concerned and asked for cardiovascular monitoring because of the risk of problems there. He refused, there was no risk. She had a heart attack - and demanded to be referred to a vasculitis expert in London. Who was horrified at how she had been managed. 

As to the nature of PMR, I found this useful explanation: Polymyalgia rheumatica is an autoimmune disease that causes an inflammatory reaction affecting the lining of joints, especially the shoulders and hips, and sometimes the arteries and some major branches of the aorta. 

If so, only inflammation of the arteries and aorta is vasculitis: the inflammation of blood vessels.  Vasculitis can sometimes accompany PMR, most often as GCA.  Simple PMR is a form of arthritis: joint disorders featuring inflammation.

Not according to the top experts in the field who I work with. What you have quoted appears on a single site - all the rest contribute to the concept it is most likely to be a vasculitis.

This paper:

Subclinical vasculitis in polymyalgia rheumatica.  H Marzo-Ortega et al

says

"Polymyalgia rheumatica (PMR) is an inflammatory condition of the aging population characterised by pain, stiffness, and symmetrical involvement of shoulder and pelvic girdles. It has been proposed that the primary site of disease may reside outside the synovial joint,1 2 but its aetiopathogenesis remains ill understood. There is good indirect evidence that vasculitis is important in the pathogenesis of PMR, based on observations from the closely related disease, giant cell arteritis (GCA).3 Many patients with GCA have PMR-like symptoms and the converse is also true.  ...

This case highlights the close link between PMR and GCA and explains some of the overlap between both, raising a number of issues. Firstly, failure to respond to moderate doses of corticosteroid treatment in PMR may reflect an underlying vasculitic process, such as GCA, which may require higher doses of steroid treatment. Secondly, vasculitis is probably more common in PMR outside the classically recognised temporal artery distribution and, possibly, as in this case, it could directly contribute to the diffuse nature of symptoms. Preliminary positron emission tomography scanning reports support the concept that large vessel vasculitis may be common in PMR. Thirdly, withdrawal of steroid in PMR is a difficult issue as it is uncertain whether residual pain pertains to degenerative or inflammatory factors. The resolution and scope of MRI are continually improving, and future studies to determine the extent of clinically occult vasculitis in PMR may help in decisions about treatment."

This was already a concept more than 10 years ago and the evidence is mounting to support it although I agree there is still some disagreement. 

However, I repeatedly hear on all the forums that the knowledge and management of PMR is far superior in the UK - where it is generally regarded as a vasculitis on a spectrum that includes GCA - than it seems to be in the USA. Your quote is from a US site I think - maybe they see it as a different disorder?

But there also seems to be a link between PMR and small vessel vasculitis with some patients diagnosed with PMR later being found to have SVV, just as some patients later are dx'd with GCA. We say repeatedly that "PMR" is just the name given to the constellation of symptoms which may have various underlying causes including cancer and other forms of inflammatory arthritis. In the case of the PMR we discuss here, perhaps for many patients it is somewhere on a spectrum between SVV and GCA and it will not be elucidated until all patients are subject to diagnostic imaging that would show it up. 

I do question that from my own experience.  i have a longstanding diagnosis of osteoarthritis, and for well over a year I assumed my increasing pain was caused by OA becoming much more active.  At the same time I wondered why I didn't feel pain in my joints, but in my muscles which always felt like they had been over-exercised.  To me inflammation of blood vessels matches my experience much more closely than inflammation in joints.

My quote comes from the US based Vasculitis Foundation but is by no means atypical.

I had also read your Subclinical vasculitis in polymyalgia rheumatica.  H Marzo-Ortega et al .  This paper is consistent with my previous post: vasculitis can sometimes accompany PMR whether sub-clinically or otherwise.  In researching PMR and vasculitis, yesterday and a month ago, I found nothing to suggest that all or, even, most PMR involves vasculitis: nothing from either the US or elsewhere.

I read somewhere that sub-clinical vasculitis is likely present in around 20% of PMR sufferers without GCA.  This 20% is not inconsistent with your paper's conclusion:

"Firstly, failure to respond to moderate doses of corticosteroid treatment in PMR may reflect an underlying vasculitic process, such as GCA, which may require higher doses of steroid treatment. Secondly, vasculitis is probably more common in PMR outside the classically recognised temporal artery distribution..."

Information grows, opinions change as the years go by.  The paper you cite is, if it's the one I found, from 2001.  That's quite a while ago.  What do more recent papers suggest?  I get the impression that the idea that PMR is a type of vasculitis has been gaining more support over the past decade or so.  I didn't have pain in my joints.  To argue that the pain I felt was referred pain from the joints makes no sense, but this was been suggested to me by someone else a while ago on one of the forums and I have read sites which claim PMR is connected to synovitis.  But which comes first?  Inflammation in  blood vessels, or inflammation in joints?  We know GCA and PMR are related ailments.  They affect different parts of the vascular system.  It's also possible that the same mechanism is affecting blood supply to joints and organs, and causing pain in those areas.  One thing I noted, it was quite startling to me when I first discovered it, was how my pain pattern matched so closely with the major nodes of the lymph system.  Has anyone studied this?  So many questions.  

Yes, the subclinical vasculitis paper is dated 2001.  From Oct 2017: Imaging techniques have identified the presence of bursitis in more than half of patients with active disease. Vascular uptake on PET scans is seen in some patients. 

From Nov 2017: The term polymyalgia rheumatica implies a myopathic process, but the muscle in PMR is histopathologically normal. It is in fact the proximal articular and periarticular structures (joints, bursae, and tendons) that are mainly affected in PMR, as has been demonstrated by scintigraphy, ultrasonography, magnetic resonance imaging (MRI), and positron emission tomography ... Proximal upper-extremity symptoms in PMR thus arise from glenohumeral synovitis, biceps tenosynovitis, and subdeltoid/subacromialbursitis, while pelvic girdle symptoms result from hip synovitis and bursitis.

I bfind severe PMR pain cripples my hip and shoulder muscles but after a couple of days on prednisolone my muscles work fine, suggesting PMR is not damaging the muscles. 

I wonder whether the presence of sub-clinical vasculitus in some (perhaps 20%) of PMR sufferers without GCA foreshadows impending or low-level GCA.  Vasculitis in PMR is, of course, bad news. 

I don't think I said the muscles were being damaged, only that I perceived the pain in my muscles.  Which is where I would feel it, of course, if the blood vessels running through the muscles are inflamed. As far as I know, PMR as such, unlike OA or RA, doesn't cause lasting damage to anything, with the exception of the fact that we are more liable to have cardiovascular events, including stroke, and untreated inflammation is a risk factor for developing cancer.  

Increased cardiovascular events could also be due to pred although Polymyalgia Rheumatica and Steroid Side Effects: New Findings of Aug 2017 disputes this.  Another possibility is that PMR pain results in less exercise, a more indulgent diet and increasing weight gain.