Rheumatologist says I do not have PMR: not a muscle disease but due to bursitis or synovitis!?
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So I went to a new rheumatologist yesterday as my GP will not continue to treat me with pred. after the first rheumatologist said that I do not have PMR with normal blood tests, so I should be taken off the pred. that the GP put me on. The new rheumatologist said the same as the first one:I need to taper off pred. and get sick again, as they do not believe it is PMR when I have/had clean blood tests, and no signs of bursitis or synovitis in my joints (I had a PET-scan a year ago). I pointed out that PMR is the muscles, and he then said that it was an old fashion view, and that the word "polymyalgy" was misleading . PMR is NOT vascular either (also old fashion) - it is in the joints!! That is the new orange. This is apparently the consensus here in Denmark, so without elevated inflammatory markers OR synovitis there are no objective parameters to support the PMR diagnosis.
He also pointed out that PMR will NEVER give muscle atrophy even when left untreated for a long time - nor muscle twitches, so I should go back to the neurologists. I am speechless..... Has anyone heard of this before?
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krillemy
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Ok, I now have an appointment at my GP next week. I wrote him that he will get a communication from both the Reumy and my physiotherapist (she also believes there is more to it than PMR and nerve involvement). The current "flair" is not getting better (I guess this uncertainty is not helping). This morning I am in PAIN after one more night of sweating. I feel like I have run an Ironman. My lower back and thighs and hips are killing me, yesterday it was the groins. So took the chance this morning an upped the pred. dose from 15 to 17,5 mg. 15 mg did miracles first when I stated, so I hope that this will help. How long time from increasing a dose un until effect? (provided of course that I do have PMR). By the way; I did a Restorative Yoga class last night (my first). It it just resting in different positions supported by pillows. You relax and breath, and it should help recovery... it was nice, but maybe not good for me 😦 ?