Haven't posted here for some time but would appreciate some advice. Was diagnosed with PMR in 2012. Have had flare ups at 6mgs on several occasions and have seen my doctor who recognised the flare symptoms and my dose of pred was put up accordingly. It always sorted the problem. In April of this year I was at last referred to a rheumatologist who advised Methotrexate to assist with an easier reduction of steroids without the 'yo-yo' effect again.
I am now on 8mgs of steroids and have for the last few weeks been experiencing fairly severe typical flare up symptoms- buttocks, thighs, lower back, shoulders, backs of arms. Some days I could easily have cried with pain and frustration. But I put up with it because I am on this new regime of MTX and steroids which should mean no more increase in steroids.
But I got to the point I knew I had to get advice so I spoke to my rheumatologist who asked me to get a blood test. And the result? "Because my inflammation markers are well within the normal parameters my pains etc are not due to PMR" I have to ask my doctor for some painkillers and wait until the end if September to see my rheumatologist in person.
So if these very familiar aches and pains( always diagnosed by my own doctor as being symptoms of a flare) are now NOT related to PMR what are they? In my imagination? Just old age? Something else? Why am I still on steroids? Why should I take MTX? Who do I believe?
To say I am confused and a little annoyed is an understatement.
I have read on this site that many people do not have raised ESR levels at all and they are not a totally reliable indicator of a flare up and that some doctors go by symptoms. But I feel like if I make a fuss that I won't be believed purely because the expert has said "No". Not PMR this time.