CRP and ESR mismatch

[Youngpoly]

Early 50s I have a high pressure job. I worked too hard and then had excruciating pain in my neck and back. Within a week I couldn’t get into or out of a car and was walking like a robot. A week later I couldn’t get up off the beach and couldn’t roll over in bed. Inflammation levels were at 90 and then it took three months to diagnose PMR after a PET CT scan. Started on 15 of prednisone but it played hell with my pre-existing type 1 diabetes. Now on Methotrexate. CRP score is acceptable but ESR score is now 50. I feel terrible and can hardly lift a water bottle. Private consultant telling me not to worry about ESR (he said that when it was at 40) and lovely GP not sure what to do. Consultant at our local hospital is poisonous so can’t go there. Any ideas gratefully received team!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

The problem with ESR & CRP tests/results is they just show there is inflammation in the body, but not what is causing it… so it could anything from something minor [like a stubbed dose or slight cold] to something more serious.

When you stay started 15mg … Now on MTX — that implies you ditched the Pred and swapped for MTX - is that correct - or have you reduced the Pred drastically…and to what dose?

Whatever sounds as if your PMR has come roaring back… and MTX can take 2-3 months to be of any great use… so a bit more info would help please.

[PMRpro Ambassador]

Is that MTX alone or with pred? MTX doesn't always have an adequate effect on PMR - whatever some doctors may try to tell their patients.

[Youngpoly]

thank you both - having seen a consultant yesterday I think I have been given some wrong assumptions from my treating team. My CRP hasn’t been under 5 since summer 2023 and my really high levels of ESR have accompanied clinical signs of flare ups. Even when presenting with classic PSR symptoms, high markers and having been diagnosed after PET CT scan I have been told I have not got active PMR. It has left me so confused and in constant pain. The initial NHS consultant was obsessed with me following the steroid reduction protocol even when it wasn’t working. I wonder if there is a real lack of experience in hospitals of managing PMR rather than other rheumatic conditions. Thanks to this site I am seeing an expert in PMR. Thinking of others who might be familiar with this bizarre state of affairs and wishing you all well! ☀️

[DorsetLady PMRGCAuk volunteer in reply to Youngpoly]

I wonder if there is a real lack of experience in hospitals of managing PMR rather than other rheumatic conditions

Unfortunately the longer I’m on this forum (13 years and counting) have to say I am in full agreement with that statement😳…

[PMRpro Ambassador in reply to Youngpoly]

Me too on DL's comment. I don't know that it is lack of experience - it is lack of thought and understanding of the disease and the patient in front of them. I have very mixed feelings about the use of PET-CT when the patient is on ANY pred. I suspect it is most valuable before initiation of pred.