New and a bit desperate!

Galleyslave

After having PMR on and off for 23 years and on and off steroids and NSAIDS my doctor now says..'Just take paracetamol'. It doesn't work of course and Im fast seizing up. Looking for ideas that may work. Or do I just get to see a rheumatologist ?

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. As I understand matters nowadays it is more usual for an auto-immune arthritis to be ruled out before PMR is diagnosed but, given the length of time that this has been affecting you, I am not surprised it hasn't happened that way. I daresay it's possible that you and your GP became accustomed to things as they were and it's taken the jolt of the steroids no longer being a treatment option that has triggered this question. Your GP should refer you and I hope he does.

Regarding pain relief there is more out there than paracetamol but this should be discussed with your GP - are you taking any other kind of medication or have other conditions to reckon with? I have psoriatic and osteo arthritis, plus fibromyalgia and began this nonsense back in 1997 aged 37; my rheumatologist ignores the OA and the GP the PsA, I keep trying to ignore them but they continually make their presence felt. Apparently PMR is more common in women than men (and rare in the under 50s) but if it is an auto-immune cause rather than PMR I reckon those 'rules' fly out the window. I wish you well and please let us know how you get on. DD

daffy2

After so many years I think it reasonable to ask for a re-assessment, not least because PMR should respond to treatment. A colleague of mine was told when she was diagnosed that she should be clear of it within 2 years. It took nearer 3, but she is now off the steroids and has had no further trouble. Her bone density readings were also OK and so she does not need the anti-OP drugs either.
You might find this link of interest as it's from NICE which is the national body which deals with standards and best practice in the UK.
https://cks.nice.org.uk/polymyalgia-rheumatica#!scenario
You will also be able to look at what is said about diagnosis.
As DD has suggested, the length of time involved has perhaps prevented either you or your GP from looking into this further. If your GP doesn't seem inclined to be more helpful(there's more to pain relief than paracetamol....) then it might be time to see, or change to, another if you can.