I have had this condition for around nine years now since I was aged 59. It took some time to be diagnosed but the relief from prednisolone was miraculous and I got my life back! Otherwise I am an extremely fit male and do regular exercise (swimming, cycling, running etc) . Unfortunately I have never been able to get off this medication. My GP insists that this condition should have burned itself out in around three years and I suspect she thinks that I am lying or a hypochondriac when I have another flare- up, as the ESR blood tests are usually normal. Prior to the current flare-up I amazingly managed to get down to 2 mg prednisolone per week (ie almost nothing) through extremely gradual tapering over almost a year, recommended by a consultant my GP referred me to. It is just so disappointing that the pain has again returned with a vengeance. This is about the fifth flare-up I have had over the nine years when getting down to really low doses. The consultant who recommended the tapering scheme said that if the pain returned I should just try paracetamol. I have been doing that for 3 weeks now and am now almost housebound with severe neck, shoulder and hip pains and general exhaustion. I seem to remember the consultant telling me that around 20% of those afflicted can never get free of this condition, but I have never come across any research supporting that figure. Maybe I misheard. Has anyone else come across such evidence? My quandary is whether to keep trying to get off pred., with the the associated disappointment and pain when failing; or whether I should just accept that I will be on medication for life. Low doses (around 2-3 mg daily) seem to keep the pain, stiffness and tiredness at bay, and I am fortunate in not suffering any obvious side-effects from the prednisolone.
Most grateful for any advice. Many thanks.