I am in the US and referred myself to a rhuemy as I felt my steroid dose could be better managed by him than my gp. My gp diagnosed me with classic hip and thigh symptoms of stiffness and pain that was a level 4 to 6 and just wouldn't go away. My sed rate at that time was 30 and I don't remember the other. He said I was classic and I started on 20 mgs, I think and got relief after a few days.
After going to the rhuemy after a year on steroids he says science is the king and blood tests must show correlation to inflammation activity. He did get me rapidly from 18 to 12.5 but I can't get below that and haven't been for 6 months. I have been tested for every other possible illness including bone tests for cancer. I think I just have PMR. I fit exactly what I read here daily. I had a shoulder issue which has been sorted out to being spinal arthritis and I recently had a cortisone shot in my c7 vertebra which can't hurt me any.
Last week I was having very bad pain so I went out for a blood test so I could prove to him and myself that something was going on. Sed rate was 11 up from 9 which was my last one. He told me today that is normal and 30 is on the high end of normal and most Rheumatologists would dismiss me from care based on that. So where do I go I asked? Well you have some kind of pain syndrome he says so he is going to try me on some anti malaria drug to see if it will work as a steroid sparer. He is horrified at the amount of preds I am taking ( and I don't tell him if I increase either) He says it will take 6 weeks to build and then start cutting my dose 1/2 mg per week and see how I do.
Whatever I have has completely taken control of my whole life and now I wonder what I have.
Thanks for the help and the rant. Bunnymom