Diagnosis

[PMRNewcomer]

Another question please. Has everyone on here been diagnosed through blood tests or is there another way. Reason I am asking is because I had two lots of blood tests about 4 weeks apart and both came back negative. The only way the doctor found it was by putting me on Pred which had an almost immediate effect on the pains.

[IslandRN]

20% have completely normal labs with PMR and reason diagnosis criteria is based on symptoms and rapid response to low dose steroids. Like you, my labs were normal however had classic presentation to include low grade fever, weight loss, "cape and girdle of pain" that did not respond to high dose Motrin, muscle relaxers or narcotic pain meds. however 75-80% improvement within 36 hours of prednisone.

[PMRNewcomer in reply to IslandRN]

Well I had the cape and girdle pain as well but no weight loss or fever. However doctor did not try any other drugs other than co-codamol which made me feel sick. Perhaps she should have tried other things first?

[IslandRN in reply to PMRNewcomer]

I would like to think your doc recognized your presentation as classic PMR and therefore knows only treatment is low dose steroids. In my humble opinion, I think you are fortunate to have a doctor such as yours that provided treatment that brought you relief as so many suffer months (sometimes years) without a diagnosis/appropriate treatment.

[PMRNewcomer in reply to IslandRN]

I am fortunate, my doctor’s practice is second to none x

[DorsetLady PMRGCAuk volunteer]

The blood tests are only one way of diagnosing a problem - and they don’t diagnose PMR as such - all they show is increased inflammation in your body which could be due to many things.

Once other illnesses have been ruled out, and depending on your symptoms your doctor may diagnose PMR, and prescribe steroids to see if they help.

In your case they obviously have, so it would appear you do have PMR. Do you think you don’t?

Inflammation blood tests are not negative or positive - but normal or abnormal - we all have some inflammation in our bodies,

[PMRNewcomer in reply to DorsetLady]

Yes I do think I have it. I have read so many things on the internet that I have come to the conclusion it can’t be anything else. X

[DorsetLady PMRGCAuk volunteer in reply to PMRNewcomer]

Well, there’s always someone on here who can help, as and when you need it.

[SnazzyD]

So the doc did well to check 4 weeks later in case there was a lag before a rise. They then scored points for not just diagnosing by numbers and treated what was in front of them, probably knowing that not everybody shows increased inflammatory markers. Then, hooray, they did a Pred trial to further narrow the field. Often autoimmune conditions are diagnosed without one definitive yes or no unfortunately but just balance of probabilities based on evidence of hopefully more than one point.

[Blearyeyed]

As the others have said , the blood tests only help them assess the level of inflammation you are suffering at that point , but that can be for various conditions , or they may not be raised with PMR for some patients anyway.

A good GP will be able to diagnose PMR from your physical symptoms , and your reaction to pain relief from taking steroids adds to and helps confirm the diagnosis.

Pred isn't a " Cure" it only helps manage the Pain and Inflammation of PMR . But , the almost " Miracle Cure" like change in your pain level as you start taking it for many patients is another strong piece of evidence of PMR.

The trick is to still learn to adjust your Everyday Routine to give you a bigger balance between rest and activity ( both Mental and Physical ) as well as taking the medication . Even if you feel 109% better after starting the Steroids. Replacing your " Old Normal " with a " New Normal" so you don't get caught in the trap many of us have fallen into by using that Energiser Bunny feeling after starting Steroids and doing too much , increasing your PMR activity again, and then paying for it .

Self Care is as important to managing your PMR and your Pred .

[PMRNewcomer in reply to Blearyeyed]

👍

[PMRpro Ambassador]

The diagnosis of PMR is a purely clinical one: made on the basis of signs and symptoms. There are lists of criteria which have been drawn up over the years they are a guide, still not definitive as most include a high ESR/CRP and there are up to 20% of patients with normal range results. That doesn't mean they aren't increased for them personally - my personal normal ESR is low single figures so 16-18 is high for me but can be perfectly normal for someone else and they would need a reading of about 40 to be in proportion. The symptoms are quite wide-ranging - there is no typical patient although there are things that are fairly common to many.

The blood markers are one sign, the response to pred another, neither are strictly delineated but add to the overall picture. And the same applies to symptoms.

Once you have ruled out all the other likely or potential options through imaging and blood tests, if all that is left is PMR then you can say "presumed PMR". Or the same for GCA - except it is possible to be 100% certain about GCA if the bopsy shows giant cells. But that is the cherry on the top - often it is a presumption too.

If you are very lucky and a PET-CT scan is available to you before starting pred then you might get the nearest to a definitive diagnosis of PMR when the typical inflammation sites light up. The average GP isn't going to request one and by no means everyone can get into the queue. It would be nice though!

There is some merit in trying NSAIDs - they are antiinflammatory. Co-codamol won't work in PMR as it has no antiinflammatory action, but then, for most people neither do NSAIDs. In PMR, pred is the painkiller - and used properly is far safer than the NSAIDs that don't really help and have a lot of nasty adverse effects too.

[PMRNewcomer in reply to PMRpro]

Thank you PMRpro, I really value your knowledge. P x

[piglette]

I was diagnosed through symptoms and seeing how well steroids helped. I did have it backed up by blood tests.

[PMRCanada]

My diagnosis came from elevated ESR and CRP, a great response from pred, symptoms typical of PMR and negative tests for other autoimmune conditions (RA).

[Rosbud]

That's what happened to me , my blood tests show barely raised markers , so diagnosed by symptoms and pred relieving them x

[PMRCanada]

I saw a rheumatologist for a brief time (3 appointments), and she wanted to rule out other conditions so I had two blood tests, one checked for the RF (rheumatoid factor), and I’m sorry, I can’t remember the other. Both were negative.

She also said she would draw fluid from my problematic knee and examine it, but that never happened.