After 25 months and a start dose of 15mg for PMR, I managed to come off the steroids completely and six weeks on I have just been told by my GP that my CRP is very good at 1(was 56) and my plasma viscosity is normal. I am delighted to be off the steroids and feel better in myself for being off them. Inevitably I have lost muscle strength and my stamina is down. My husband estimates about 70% of what they used to be so I plan to do more walking and swimming. I have never completely lost the aches but they are slight and liveable with and the stiffness has gone. My GP reckons they are due either to weak muscles or minor strains.
My heart goes out to those who are suffering. My experience was to drop very slowly as per all the good advice on this website and take life quietly for 2 weeks after dropping to minimise withdrawal symptoms. Also to relax and avoid stress as much as possible and to find the balance between rest and exercise(difficult when I had been used to a very active life). Inevitably I had sessions of overdoing things followed by complete exhaustion particularly during the first year after diagnosis. I count myself lucky to have a good supportive GP, a helpful hubby and to be retired. I don't know how anyone could work in the early stages of PMR!
Life is so much better now and I have so much more energy and can do much more.
I wish everyone in this community better health. Thanks for all of the support and I will drop in from time to time to see how you all are.