Over 2 years I had reduced from 50 mg to 3mg of Pred but found I was getting terribly achey round the neck, shoulders arms and even hands, and a bit my legs; also very tired. I stuck with this for at least two months then I tried going up to 4mg and then 5mg which has definitely helped. However along the way, I had a blood test which the rheumatologist said was normal. (My ESR was about 90 when I started the PMR.) The rheumatologist said I should not increase the Pred because the ESR was not raised and said I should take regular paracetamol which I have never found effective (though to be fair I have never taken it regularly).
Could my aches NOT be PMR, even though the Pred increase helps?
Also could the tiredness be my adrenals not woken up? If so, should I ask for a synacthen test? and if they haven't woken up, what does that mean in terms of treatment?
I have always done decreases of pred slowly and gently and was fine at 4mg before this.
Thanks for any help!