PMR with normal inflammatory markers- GP says not but symptoms agree

[Nester]

Hello, this is my first post but Ive been reading the community posts for a while now and finding them very helpful - thank you! I've been troubled by typical PMR symptoms for at least 2 years, very painful and debilitating but my inflammatory markers are normal and I'm told its just old age - I'm 59. I have had to accept this but then started on prednisolone 20mg 18months ago for a different condition and my pains just disappeared! I have slowly weaned to 10mg but pain returns below this after a few days. I'm wondering if it is possible to have PMR if inflammatory markers are normal? Thank you

[PMRpro Ambassador]

Exactly the same as my experience. Told the symptoms were "age related" at 51 and at the gym every day. About 20% of patients have markers that are in normal range - which isn't necessarily that they aren't raised for them.

Normal range is the range of results found in 95% of a large population of apparently healthy people - we're talking 10,000 or so - not the range that it is OK for an individual to have. My normal ESR is low single figures, the range for ESR is usually 1-20 and for several weeks during a severe flare and cardiac problems mine ran at 16-18. No-one turned a hair. But for me they were very raised.

[Nester in reply to PMRpro]

Thank you so much for your helpful and speedy response, its quite a relief to find that diagnosis doesnt have to entirely be 'the numbers'. I'm wondering if there are any publications that refer to 20% of PMR sufferers do not have raised markers so that I can support my request for a referral to a rheumatologist as my symptoms return with a vengeance each time I try to reduce the pred below 10mg. Thank you

[PMRpro Ambassador in reply to Nester]

NICE says"The BSR/BHPR guideline states that PMR can be diagnosed with normal inflammatory markers if the clinical picture and response to corticosteroid treatment are typical, but this will be in secondary care as referral is recommended for people with normal inflammatory markers [Dasgupta et al, 2009; Dasgupta, 2010]."

I can't give you the link as I'm outside the UK so it doesn't come up.

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

even if they do suggest it is a more benign version of PMR when the marers are low!!!! Not something I'd agree with ...

uptodate.com/contents/clini...

under Lab findings.

[Nester in reply to PMRpro]

Thats great thank you!

[ChinaWuntoo in reply to PMRpro]

Is this the link?

academic.oup.com/rheumatolo...

[PMRpro Ambassador in reply to ChinaWuntoo]

No, it's the link for BNF (British National Formulary and the particular drug I can't give because I can't see it all - it tells me it is only available in the UK.

[PMRpro Ambassador in reply to PMRpro]

Tried a different approach!!! This one maybe - I want the one for EC pred and prices ,,,

bnf.nice.org.uk › drug › prednisolone

[1951grumpa in reply to PMRpro]

Thank you very much for the Link!!

[HeronNS]

Well, the fact you're on a significant dose of pred is most likely having quite an effect on those inflammation markers. You could try one of the slow taper methods to get below 10, if you haven't already.

[Nester in reply to HeronNS]

Hello, thanks for replying - I've been following DorestLady's slow wean plan which has worked well but just seem to be stuck at 10mg - had to go back up to 12mg as so painful - my other medical condition is well controlled too on this dose but GP v keen to stop the pred altogether as 'its not good for you'. True!

[PMRpro Ambassador in reply to Nester]

Neither is unmanaged PMR!

Is 11mg still enough?

[Nester in reply to PMRpro]

Hello, sorry for delay in replying... painful and very tired on 11mg, so went to 12mg which has eased the muscle pain but still v tired. Its difficult to increase the dose too much as my GP just wants it to reduce and they write the prescriptions ...

[PMRpro Ambassador in reply to Nester]

Find another GP.

[Nester in reply to PMRpro]

Good advice 😁 avoided doing this so far but our conversation has empowered me - thank you for your help and advice today, much appreciated!

[PMRpro Ambassador in reply to Nester]

Good luck! I know it can be difficult.

[Swim2swim]

Hi Nester, I am one of those people whose inflammatory markers are “ within normal limits “ . Both in 2010 when I was first diagnosed ( luckily I had a GP who was convinced I had PMR) & started me on prednisolone.Then again in 2018 ( different surgery)when it reappeared I had to see 2 different Gp’s as the first one I saw said I couldn’t have it because my blood test results were Ok.... For me then starting on prednisolone again was like magic.

[tallgal]

I had the same situation. Blood markers not up so told it wasn't PMR but pred sorted it . I had a flare after my first jab and knew the symptoms well . Pred for just 5 days settled it thankfully. Now I'm struggling as my dear husband of 55 years has just died and pred does nothing for grief.

[PMRpro Ambassador in reply to tallgal]

I'm so sorry - virtual hugs xxxxx

[tallgal in reply to PMRpro]

Thank you so much I am grateful that my daughter is nearby and is arranging the service which is on Friday

[Bennijax in reply to tallgal]

No. So sorry to hear of that. Grief is normal, not an illness, nothing can take away the whole of the pain of what is a natural reaction to such a great loss. But it can makes everything else feel that much worse.

[Nester in reply to tallgal]

Hello, thank you so much for taking the time to get in touch; your words are reassuring as I've been struggling for a long while and knowing that I'm not alone with this is so helpful. I am so sorry for your loss,. Hope the service goes as well as it can; ill be thinking of you x

[tallgal in reply to Nester]

Thank you Nester

[Frenchduck in reply to tallgal]

My heart goes out to you. So sad and your husband was so young. My sincere condolences xx

[tallgal in reply to Frenchduck]

Not that young he was 77 .The 55 years was how long we were married.

[Frenchduck in reply to tallgal]

Sorry, I misread that. After 55 years of marriage I know your loss will be huge and no words will make you feel better. I wish you and your daughter well.

[Bentley12345 in reply to tallgal]

So very sorry about your loss! so devastating! Sending Hugs and prayers .

[tallgal in reply to Bentley12345]

Thank you Bentley

[Toryvanv]

Yes! My inflammatory markers were "within normal range" and the doctors completely ignored me and suggested tonic water. Untreated, my PMR and GCA spiraled out of control until I could barely walk and couldn't do any daily living activities like bathing and getting dressed. Did the inflammatory markers get measured while you were on pred? Or do you have pretreatment baseline numbers?

[HeronNS]

Not sure if this has been covered, but as you've been on pred for a while, and using a sensible tapering plan, and still having trouble going below 10 mg, has your doctor ever run the tests to rule out other conditions which present with PMR type pain? You can find out about these by googling : Polymyalgia differential diagnosis. Not that it's likely, given your story, and you say you have another medical condition which responds well to pred, so probably have had good diagnostic work-ups, but a good idea to check neverthless, PMR being a diagnosis of exclusion.