DIAGNOSIS

[chiwawaa]

Are there any definitive tests....labs or otherwise that can diagnose PMR for certain? Or, is it more symptomatic? I was diagnose 4 years ago after 2-3 years of symptoms. My rheumatoid factor was elevated and I was told the was not necessarily anything to worry about. I'm so miserable and know prednisone would help, but I would like to get labs, but I want to make sure I get the right ones (as we have to look out for ourselves as well) I have every symptom of PMR but gonna go to different MD for new labs before going back on Pred Thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

Unfortunately there isn’t one certain test to say you have PMR. Diagnosis is based on symptoms, and generally ruling out all other options first. ESR and CRP may be raised, and that is used by doctors as a defining factor. It’s not a particularly accurate test though - not everybody has raised markers at any time during their illness, and both can be raised by other factors.

If you are diagnosed with PMR and given a starting dose of 15mg, the consensus of opinion is if it works it’s PMR, if it doesn’t work it’s not PMR (or it’s not enough Pred)!

Your comment “before going back on Pred” makes me think you didn’t get rid of PMR last time around and it’s still lurking, is that correct? Did you come off the Pred early ?

[chiwawaa in reply to DorsetLady]

I was on for 7 months and felt great The prednisone agreed with me the whole time until I came off. (weaned off) Considering going back on it, but want to start off with another rheumatologist. I have been trying to deal with it for the last few years and in so much pain sometimes, but, PMRpro pointed out about how much inflammation can harm the body, often more than the Pred.

[DorsetLady PMRGCAuk volunteer in reply to chiwawaa]

Hi again,

Well your PMR was obviously still alive and kicking when you stopped Pred. Some doctors say it lasts 2 years, but usually it’s much longer.

I think we’d all agree no point in being in pain when there is a cheap and easy way to stop it. I know Pred has side effects, but at the level you’d probably need they’re not that bad.

Wouldn’t have though that as you already have cataracts there will be a problem, but I’m sure you could find out from ophthalmologist or Dr Google.

[chiwawaa in reply to DorsetLady]

Thank you !!

[PMRpro Ambassador]

No, there are no 100% certain tests. It is a clinical diagnosis on the basis of symptoms and possibly, though not necessarily, raised ESR/CRP (they are normal in up to 20% of patients) and excluding other possible options.

Many healthy people can have a slightly raised RF but more recent thought is that if it is significantly raised it may indicate that the person will develop some form of inflammatory arthritis at some later point.

But if you are miserable and pred does the job at a low dose - it is sometimes used in RA too - where is your problem? Long term use of PMR-level doses has been found to not be the problem it is perceived to be by many people:

practicalpainmanagement.com...

[chiwawaa in reply to PMRpro]

Yes, You are exactly right. and because of your advice about that before, I am wanting to get back on it but wanted to find out what tests I should be sure to get. You pointed out how much inflammation can harm the body, perhaps even more than Prednisone. I am so greatful for that information. I should know that, but you know sometimes "you can't see the forest for the trees" especially when you have so much pain. TY!!!

[chiwawaa in reply to PMRpro]

I guess I'm being a pest now, but what if I have had cataracts removed and the primary side effect of the steroids is cataracts. Would it affect the lens implant?

[polymy in reply to chiwawaa]

I have been on pred for 2 and a half years now and had cataracts removed several years before. The pred hasn’t affected my implants at all so hopefully it won’t yours either.

Liz.

[chiwawaa in reply to polymy]

Thank you Liz

[PMRpro Ambassador in reply to chiwawaa]

Once a cataract has been removed and an artificial lens implanted the pred can't cause any further trouble - the damage is to human tissue. But there is no certainty you will develop cataracts - after over 7 years there was no sign of one the last eye check I had. I wish!!!!!

[chiwawaa in reply to PMRpro]

Thank you. Wow! It seems so many without PMR have cataracts, so you are extra fortunate!

[PMRpro Ambassador in reply to chiwawaa]

I would actually welcome cataracts - I would be able to throw away my distance glasses and only need to wear specs for reading instead of having a pair on my nose every waking hour!!!! 60 years of wearing them hasn't been a joy I can tell you!

[Deemar in reply to PMRpro]

I had my cataracts done in September. Doubt it was anything to due with the pred as my eyes have been bad for years. It's like being reborn! like you I have had them on my nose for 60 years. Even now, a couple of months later I wake up and reach out for y specs. Don't need them now for reading or round and about but do need them for driving.

[PMRpro Ambassador in reply to Deemar]

So envious!!!!!

Did they do "monovision"? I had contacts done like that, one eye for reading, one eye formiddle distance and specs for driving. Brilliant. Until PMR and dry eyes put paid to it...

[Klah in reply to chiwawaa]

Guess it is good to remember that people not taking prednisone get cataracts also. I have several friends that have. But...I tend to blame everything in the PMR and prednisone...why not😊

[PMRpro Ambassador in reply to Klah]

Because SOMETIMES it isn't and it matters! I had palpitations, it'll be the pred you'll chorus because that is what many GPs will say. But it wasn't. It was due to the a/i part of PMR having damaged the electrical cells in my heart causing Sick Sinus Syndrome. It was found after I had a severe drug reaction to i.v. diazepam - but once it was identified and treated I realised those funny episodes that I hadn't really realised were palpitations had gone. And I had had them before pred. So definitely NOT pred!!!!

[jinasc]

Put British Society of Rheumatologists in you search engine and then Diagnosis and Treatment of Polymyalgia Rheumatica.

[chiwawaa in reply to jinasc]

Thank You! I will

[SheffieldJane]

I wish there were definitive tests and that doctors were less anxious about Prednisalone ( they happily prescribe much more dangerous drugs in my view and Pred ( unlike some dangerous drugs) does exactly what it says on the tin.

Don't suffer unnecessarily! Who knows? You may just have to deal with the tail end of your old PMR this time. Inflammation, left unchecked, is dangerous in itself. I am waiting for an ultra- sound to find out if my heart has been damaged by inflammation, prior to treatment with Pred.

[jinasc in reply to SheffieldJane]

Sheffieldjane,

There is in the currently issued guidelines, which are still awaiting clearance for issue to GPs. The previous PMR guidelines never achieved clearance, the waiting list for clearance it long. (money once again?)

This link will take you directly to the current guidelines for Diagnosis and Treatment for both PMR and GCA. Although the new guidelines for GCA are awaiting clearance from the BSR.

There is also exclusion tests for PMR. Once those are exhausted...........pred and if it works within a very short time it is 98% sure it is PMR.

Before anyone asks, pred is of no use for Fibromyalgia.

pmr-gca-northeast.org.uk/us...

Both sets of guidelines for diagnosis and treatment are issued direct by the BSR to their members, who are at Consultant level.

GPs guidelines are issued by what used to be called NICE, they changed their name a few months ago.

GPs, can and do use Patient UK and the NHS websites.

Hope this helps.

[SheffieldJane in reply to jinasc]

Many thanks for this useful information jinsac.

[chiwawaa]

Feeling much more secure about going back on Prednisone. Without this site and all of you lovely people, I never would have thought about the damage that the inflammation has/is doing.

[allwritemel1967]

Hi, I have been repeatedly told by my useless doctors I don't have PMR - you can't because your ESR and CRP levels show they are not raised. It's you're imagination. You're a writer, you are probably creating it (sadly I have had that comment more than once - I only wish I was joking). However, that all changed when I went to see my wonderful doctor who is new at the surgery. He put me on Prednisolone for a week to see what happened and the results were dramatic to say the least. I went back and said I wanted to kiss him because the result was so wonderful. The bombshell dropped - I can't stay on it. God I wish I could. Waiting to see a specialist on the 27th November ... all my symptoms are back with a vengeance. He explained to me that as far as he knows there is no magic test that will reveal PMR/GCA ... he wanted to do something we've never done before to see if we get a different reaction - which we did. I was a different person, too! I wish you all the luck in the world. I wish there was a simple blood test or some other test which would prove the diagnosis conclusively. Hope you feel better soon. My only side effects from the Pred were a raging hunger and very marginal nausea. I couldn't stop eating and was actually getting out of bed at a reasonable time!

[PMRpro Ambassador in reply to allwritemel1967]

Why on earth not? Sheer stupidity.

researchgate.net/publicatio...

This paper was aimed at GPs to help them diagnose and manage patients with PMR and GCA without so much recourse to specialists. It won't be long before you won't get to see a rheumy unless you are half dead so he might as well take some responsibility now.

[chiwawaa]

Thank you for your reply. I wish I knew why you couldn't stay on the Prednisone or did you mean you couldn't stay on high enough dose?

[Brandon47]

Only test is blood test which will show if you have pmr or not

[chiwawaa]

What test is that? Thank you Brandon

[PMRpro Ambassador in reply to chiwawaa]

Sorry to disagree with Brandon but no, there is no blood test that will show if you have PMR or not. The tests they do are the ESR (sed rate) and CRP which are measures of whether there is inflammation existing in the body. But it can be ANY inflammation, not just due to PMR, even a cold or chest infection will raise them. And for up to 20% of patients these tests are not raised, no-one knows why, it is just so. Or they may lag a long way behind the symptoms developing.

So the diagnosis is a clinical diagnosis - i.e. the clinical history and symptoms taken together with the blood tests, some of which are done to rule other things out and not PMR/GCA in. If the ESR/CRP are raised then it is supporting evidence - but not 100% certainty. Just as the TAB (biopsy) done for GCA is 100% certainty when positive, but not if negative - it just means they didn't find what they were looking for (or even, the pathologist didn't know what they were looking for, it can be a lot more subtle than there being giant cells on the slide) in the sample they looked at.