Testing negative

Has anyone been diagnosed with PMR when two lots of blood tests, show the inflammation markers as being normal? I seem to have all the symptoms but because of the blood results no one is quite sure.

[DorsetLady PMRGCAuk volunteer]

Up to 20% of patients do not have raised blood markers - those that didn’t/don’t will be along idc.

Symptoms are the key- but it’s sometimes difficult to persuade doctors it’s PMR without the raised blood markers!

Once everything else has been eliminated, and you still have PMR type symptoms, it might be worth suggesting a trial of steroids for a couple of weeks to doctors.

[Hidden in reply to DorsetLady]

Thank you for your prompt reply, DorsetLady! As I have shoulder and upper arm pain, I can't be sure that I haven't damaged the rotator cuff after an operation on it a few years ago. Pain in the right buttock and front thigh is so bad that I can't put weight on that leg climbing stairs. I was diagnosed with PMR in November and had four months on Prednisolone but now off it. Both before diagnosis and after being off the drug the inflammation markers were negative. The buttock pain was already there when on the drug, but maybe the dose wasn't high enough. The shoulder is recent. Spine is also sore in several places - so am having bones checked out tomorrow to see if the problem isn't mechanical; if not, I guess it'll be back to steroids after I've seen a rheumatologist.

[Hidden in reply to DorsetLady]

Sorry, I meant to ask you what you meant by "those that don't/didn't will be along idc"??

[anonmnor in reply to Hidden]

While I am unsure about the “idc” part (in due course, perhaps ?) DorsetLady meant “those (PMRGCAuk forum participants) that didn’t/don’t (have raised inflammatory blood tests)” will be adding their input soon, once they see and respond to your message (like I am now).

After experiencing PMR-type pain for a few weeks and Googling my symptoms to provide myself with some idea of what might be affecting me, I informed my PCP (Primary Care Physician) that I suspected PMR, but he wanted to perform the requisite blood tests (CRP & ESR), before delivering a diagnosis, and those tests were both negative in my case.

I then told him I would wait 1 additional week to see if the symptoms persisted , eased or worsened. With no real changes in my symptoms, on my next visit I asked to be put on a trial run of prednisone, which my PCP agreed to do. I was prescribed a 15 mg daily dose. On the first day, I felt quite a bit less pain than before, and by the third day I was nearly pain free, confirming a diagnosis of PMR with normal inflammatory blood markers.

You must be strong and advocate for yourself in the realm of healthcare these days. Despite being a fairly common condition afflicting the elderly, many doctors are still rather unfamiliar with this condition and therefore rely on textbook-learned knowledge rather than actual hands-on experience (which they lack through no fault of their own).

I was fortunate to have a PCP who was open and willing to follow my suggestions regarding my treatment, but you may have to be a bit more forceful than I was with your particular health care provider. Since a short-term, temporary dose of prednisone as a diagnostic procedure will have few (if indeed any) negative side affects (although your doctor will know better than I about this given any other diagnoses or medications that you may already have or be taking), you have little to lose and potentially much to gain by asking for this. Relief from PMR symptoms upon taking prednisone is rather swift, with at least a 70% reduction of symptoms within a week or two being a typical response.

Best of luck in your search for a diagnosis and treatment for your condition.

[Rose54 in reply to Hidden]

in due course

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Others have replied...sorry if my answer was a bit confusing- meant those in same situation as you and “in due course”

[PMRpro Ambassador]

My blood results were never out of normal range - that doesn't mean they weren't raised for me though: my ESR is normally low single figures, it ran at 16-18 for weeks during a big flare but that is still "in normal range" so no-one remarked on it. This happens in up to 20% of patients,

DL meant that people like me would come to tell their story! It took me 5 years of trailing to the GP and being dismissed before I had a massive flare which still wasn't recognised as it happened together with something else. I managed to get here to my flat in Italy where I don't have to worry about stairs (helps a lot!) and spent a lot of time online and worked out - by accident almost - that it was probably PMR. Still had a fight with the GP and with a rheumy who wanted it to be anything but. However, he did let me have 6 weeks of pred, a taper of 2 weeks each of 15/10/5 and stop. Within 6 hours of the first dose I was back to almost normal in terms of muscle pain although the hip, foot and hand pain took longer (bursitis). And within 6 hours of missing that first 5mg dose I was in as bad a state as before.

The buttock and thingh pain could well be piriformis syndrome affecting the sciatic nerve (it passes through the muscle and gets pinched when the muscle is tight) and it is quite common alongside PMR.

[HeronNS]

You were only on pred for four months? Your inflammation markers would be down when you were on the drug - that is what pred is supposed to do! It doesn't cure the diseae but it alleviates the symptoms (if you are the right dose) until the disease decides to go into remission which will nearly always take at least two years. The median time people have active PMR is nearly six years, some few have it longer (I've reached that point, like just about now!) and many have it for considerably less time. But four months?

[Hidden in reply to HeronNS]

The markers were tested before I was diagnosed and then two weeks after coming off the cortisone. I was not tested during the four months I was on medication. That is precisely why I asked the question; I am not sure that my diagnosis was correct. One of the reasons that my doctor wanted me off the medication as soon as possible was so that the Covid vaccination would have a better chance of success when my immune system was less impaired.