Update - Not Polymyalgia?

[Purplelamp]

Update - First had Polymyalgia 2018 tapered off successfully 2020 CRP10 ESR 26. Diagnosed again July 2023 CRP4 ESR 26. Symptoms completely different (all neck, shoulders, arms) Put back on 20mg steroids. I wasn’t convinced on 2nd diagnosis so GP agreed I should taper off. Began taper, had blood tests then received a call from GP to say ESR had gone up to 33 so “confirming” I had PMR again so steroids back up, been tapering since.

Saw Rheumatologist 28/12. He said I don’t have PMR but my symptoms are from cervical spondylosis (from neck xray GP had ordered after I insisted) Rheumy told me to taper off a milligram every 2 weeks and go back to GP for painkillers or amitriptyline.

I’m beginning to think doctoring is pure guesswork? Also feel a bit annoyed to have been told to take steroids for the last 6 months for no reason?

Rheumatologist thinks my ESR went up when I reduced the steroids because I had put on weight? I had put on a stone.

[DorsetLady PMRGCAuk volunteer]

Rheumatologist thinks my ESR went up when I reduced the steroids because I had put on weight?

It can be blamed on many things as we know, but not sure weight is a common theme… 🤦🏻‍♀️.

Good luck with your reduction, and time will tell if it is or isn’t PMR…

[PMRpro Ambassador]

Weight can cause higher markers - but I think that is a bit OTT, gaining a stone is hardly morbid obesity! Lot of other reasons that ESR might go up and it may have been coincidence.

Everyone I know who has had PMR twice or more says every episode was different! I'd leave the jury out for now! Did the steroids help the pain?

[Purplelamp in reply to PMRpro]

Yes, I also went to a chiropractor who stretched all my muscles. I’m on 8mg now and pain free.

[PMRpro Ambassador in reply to Purplelamp]

I tried a chiropractor recently for the back pain - the pain has changed which is something but I wish HE'D stretched my muscles!!!!

If you can get to a low dose of pred and still be pain-free, it might be preferable to painkillers in the long term. Don't rule it out. I'm basically left with paracetamol due to concerns about long term effects of most NSAIDs - and it does zilch!