I think that after a while you feel that with your own personal experience and reading all these posts that you would have got things more sussed but the longer I go on with PMR/ GCA symptoms the less sure I seem about things!
My recent experience has been to be diagnosed with some GCA symptoms in addition to the PMR and that necessitated me going from 10.5 in January to 21mg in June this year to get symptoms under control. After seeing the very nice Consultant in Surrey he suggested that I start reducing I mg per month. This I have been doing until 2 weeks ago when I tried reducing from 19mg to 18 mg , all went well for over a week after reduction and then this week I started to get very slight temple pain and a lot of stinging pain in my arms and back. I've taken this to mean that the 18mg is not controlling the inflammation and after leaving it for 3 days ; the pain gradually getting worse and not subsiding I have today taken 19mg. When originally going down from 15 mg to 10.5 mg (when first diagnosed in Nov 2014) I used the dead slow method but when I suggested this to the consultant he seemed to think this wasn't necessary so I had thought I'd do the I mg drop per month, if all went well, and then do the dead slow method from 15 mg onwards. I'd decided to do this I think as the amounts of steroid was higher( so the % drop less) and I thought I'd cope with 1 mg drops at this level and also I was influenced by the consultant's reaction and I think that perhaps I wanted to do as he suggested on this occasion.
After this long introduction what I wanted to ask after re reading posts is how much pain should we expect on reduction? Some say that you can't expect to be pain free and that you will continue to get pain as you reduce others say that if you're having pain then the inflammation is not being controlled and you need to go back up to where you felt most comfortable. I think too that when I was using the dead slow method I was never too sure what was withdrawl and what was flaring as it was over a long period of time. Do you wait until you have completly finished the 4/6 week period of reduction before being able to tell if it's withdrawl pain ( that starts soon after and gets better) or a flare that starts a week or so after and then starts to get worse?
I feel I should really know the answers to all this but obviously I don't ! and feel obviously a bit disappointed that I'm now again going up rather than down on the Pred.
Thanks a lot