PMR flare?

[Den73]

Good morning ....my saga with rheumatologist and strange symptoms continue.I was succesfully tapering Pred got right down to 17.5mg, after a few attempts and had to increase because of flares.

Had the issues with Methatrexate and toxicity first dose was 20mg ...really knocked me, so I stopped taking it, then saw the rheumy within the next 3 weeks who basically would not take no for an answer to another try on MTX he wanted me to continue with the higher dose of 20mg I agreed but said I would do 10mg just ascwell I did I was even more unwell and told, not by the rheumy, the pharmacist said its very clear you cant take it, so that did it for me, so on 8th May saw him again asked again about hydroxychloroquine, he wasnt even prepared to discuss it, rather the answer i received is that we will just carry on with pred for the next 6 months and see how I do on that alone..the advice was to lower to 5mg pred and stay on that....he will phone me in 6 months.

But then during the week that followed i dtarted with severe upper back neck and shoulder pain but really severe, so I increased the pred to 20mg made ni difference and then 25mg still no difference and finally went up to 30mg....but then started questioning this was polymyalgia as I remember when i first started in June 2023 I was only on 20mg pred and within a few days the pain was cometely gone.

We t to GP yesterday he agreed with me that it was unlikely to be a flare of polymyalgia, has ordered an MRI the pain is relentless mainly in mid back just about where the shoulder blades begin, cant even cough or sneeze, really odd. He gave me strong painkillers which has eased the pain sonewhat as before it was a sharp stabbing pain very uncomfortable.

Has anyone ecoerienced anything similar, at the moment the pain is in both shoulders more severe mid back and down my arms.

I also suffer GCA and Sjorgens.

Thank you in advance for your comments.xxx

[PMRpro Ambassador]

For a start I'd be requesting a second opinion - at a different Trust so it isn't a colleague in the same team. Unless your GP will write to the director of rheumatology and explain you feel unheard by the current doctor and the relationship is rocky to say the least.

If I'd had pain like that I'd have expected a spinal x-ray pdq to rule out a fracture at least. The fact it responds to painkillers really makes it unlikely it is PMR.

[Den73 in reply to PMRpro]

Thank you PMRproThank you for your sound advice on how to go about obtaining a 2nd opinion.

I am seeing my GP on 16th for him to start proceeding. My GP is very understanding so I really hope it will have a favourable ending. Xx

[PMRpro Ambassador in reply to Den73]

Good luck

[Den73]

Thank you PMRpro x

[AtopicGuy]

I think anyone suffering the combined symptoms of "PMR", "GCA and Sjorgens" (all of which are autoimmune conditions), plus other, unresponsive symptoms, is entitled to request a deeper investigation, not just painkillers.