”….it is unlikely that PMR will be diagnosed”

[MerryMiller]

Above quote from UK NHS website. It specifically refers to blood test results where ESR & CRP are ‘normal’. My GP and physiotherapist say my symptoms mirror PMR which isn’t supported in my bloods test. I’m confused and uncertain how to proceed. Do I seek further tests? Do I request referral to a specialist in Rheumatology? Do I simply take Prednisone if prescribed?

Any help advice or information appreciated. I’m 71, fit for my age, not on any other medication (just come off Atorvsstatin).

thanks

[DorsetLady PMRGCAuk volunteer]

hi and welcome

it is unlikely that PMR will be diagnosed” - yes but that doesn’t mean you don’t have it!

Different studies show that between 7-20% of patients don’t have raised blood markers -that’s why symptoms are the key… and your response to the Pred.

But if you have just come off a statin -might be worth waiting to see if your aches get better -they can be similar. Have you been prescribed anything else for your cholesterol?

[MerryMiller in reply to DorsetLady]

Thanks for your response. Genuinely appreciated. Nothing prescribed for my cholesterol as coming off the Atorvastatin was to monitor if my condition changes in any way. I’m 4 weeks into that and a slow but measured improvement has occurred and no one is certain why. I’m simply happy that for now lifestyle measures appear to have arrested any decline.

Once again, many thanks.

[Bigbaldgit67]

My blood markers were normal but I was still diagnosed and treated for PMR. Currently at 10mg having started at 20mg 7 months ago. I also take Arorvastatin and have done for several years. I’m a 55 year old male so didn’t fit the “usual” profile for PMR in any regular way but this proves the profile is not the be-all-and-end-all, symptoms are the key driver.

[MerryMiller in reply to Bigbaldgit67]

Thanks for your response. Any information is helpful. I continue to have the symptoms but they’re manageable and slowly but markedly reducing. With or without steroids, I accepting it’s going to be a marathon.

[PMRpro Ambassador]

Hi and welcome!

The blood tests are just a brick in the wall of evidence and up to 20% of patients have blood markers that don't rise above the normal range - it doesn't mean they aren't raised for you though. Mine never went above 16-18 during a really bad flare which is well within the "normal range" but it is really high for me as my normal is low single figures. Some doctors don't realise that normal range is the range of levels found in a large group of people (they use a population of 10,000 or more to collect the data) and each person has their own personal level.

Here are two papers by a leading PMR group - show them to the GP,

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

If it looks like a duck and walks like a duck but has lost its quack, it is still probably a duck!

However - it may be worth waiting and seeing if stopping the atorvastatin works but that may take a few weeks.

[MerryMiller in reply to PMRpro]

Thanks. Much appreciated. Just joined the forum and your response along with others is extremely helpful in building up my knowledge of PMR, something I’d never heard of 2 weeks ago.

[MerryMiller in reply to PMRpro]

2nd response. Very interesting articles. Thanks.

Can’t find any articles where GP’s or Rheumatology experts have had success with PMR without prescribing steroids. There must be some sufferers out there who, however long it has taken, have had success without the usually prescribed drugs.

[DorsetLady PMRGCAuk volunteer in reply to MerryMiller]

Did reply, but it disappeared - have replied on new post...

But some do/have got through without Pred, but not sure how good QOL they had.. and certainly in days of yore I'm sure many got missed [as it was probable put down to "rheumatics in old age" ] and suffered needlessly..

[PMRpro Ambassador in reply to MerryMiller]

I had PMR for 5 years before it was diagnosed and I was given pred - not because they wanted to manage it without steroids but because they didn't manage to diagnose it. You don't "have success" with PMR without pred, the patient remains in pain and disabled until it decides to burn out and go into remission. That might be a couple of years or it might be 18 years and counting as it has been for me. Pred isn't a cure - there is no cure, You can only manage the symptoms as best possible. Steroids are the mainstay of that management, particularly in the UK since the new biologic drugs are not approved for use in the UK. There are two used in the USA but they are not approved in the UK and are unlikely to be.

I live in Italy and have been on tocilizumab/RoActemra for something over a year and have been able to taper from 19mg down to 5mg pred.

[piglette in reply to MerryMiller]

My other worry would be without steroids I would be more likely of contracting GCA and then with steroids I could go blind.

[FalmouthHeights]

20% of pmr people have no elevation on those 3 tests. You have to have all symptoms of pmr - over 60, quick onset, bilateral pain shoulders and hips, etc.

[PMRpro Ambassador in reply to FalmouthHeights]

That isn't entirely true - the age threshold is 50 these days. And none of those are actually diagnostic criteria, they were developed for including patients in clinical studies, In clinical practice, the involvement of both hips and shoulders is also not required, it is either/or hips and shoulders as well as both.

[FalmouthHeights in reply to FalmouthHeights]

I meant age 50! Stand corrected. Yes, there us variation in symptoms. I reported classic ones.

[DorsetLady PMRGCAuk volunteer]

20% of pmr people have no elevation on those 3 tests

Up to 20% … depends what study you read…

[Bramble2000]

A very good test for PMR is a course of 20mg Prednisilone for a week or so. Prednisilone being a strong anti inflammatory will help an awful lot of conditions, however, it’s seems to have a dramatic effect on Pmr. In theory, following a few days of treatment, if it’s PMR, you’ll be tripping the light fantastic! The trouble with a lot of blood tests and indeed MRI’s etc, is that there will always be anomalies. A good Doctor will treat the whole person including their symptoms regardless of what the tests say. An MRI for example is simply a snap shot in time. I had a long journey to diagnosis because I was 49 when I started with it and was told I categorically didn’t have PMR because I was too young 🙄. I would take the steroids, see what happens. All the best to you. X

[Gimme]

I didn't have raised inflammatory markers and I didn't have a sudden onset either. I had all the other symptoms of PMR for years and it took a very young newly qualified doctor to recognise what was going on and he sent me to a rheumatologist. My pattern has been flaring and remitting over the years and I've had it for so long that I don't even remember the first attack, so my age of onset and duration don't match the supposed pattern either. What was taken into account, was my symptoms and my immediate and miraculous response to pred. From my own experience, I get the impression that the diagnosis depends an awful lot on who your first point of contact is and how stuck in their ways they are. I had visited the GP a lot of times before anyone took me seriously, until I turned up at the last one, exhausted, desperate, tearful and in pain. He could see my despair and he wanted to help, so I guess I got lucky that time, but it shouldn't come to that. Your GP sounds sympathetic, I would keep him on board if I were you and go back to him and ask the questions, specifically, what happens next?. You don't have to suffer unsupported.

[PMRpro Ambassador in reply to Gimme]

Spot on! I think that is a typical pattern for younger patients with PMR.

[Gimme in reply to PMRpro]

I've also got my own theories about what happens when a perimenopausal woman turns up at the doc's, exhausted and with aches and pains and perhaps a little on the plump side.

[PMRpro Ambassador in reply to Gimme]

Think they are fairly common theories. I got the impression that was my plonker thought - though I did warn him about even THINKING of suggesting to me it was "all in your mind" ...

[Gimme in reply to PMRpro]

oh, to have been a fly on the wall, 🤣🤣🤣

[Gimme in reply to Gimme]

oh, and when I got the blood results back, I asked the GP if he still thought I had PMR and commented how long it had been going on. His words "oh, that's only a small part of the puzzle, we go by your symptoms and the response to pred"."