I was diagnosed with PMR in May 2020 and am now weaning from from 4mgs to 3 using the DSNS method. I have experienced pain in my buttocks recently which is how my PMR first presented so I have stopped and gone back to 4mgs.
Today I had a telephone consult with my GP who informed me that working adrenal glands provide the equivalent of 5mgs of Pred so any dose lower than 5mgs should not provide any extra relief from PMR inflammation.
Fortunately he agreed that one treats the patient ,not the text book theories, and advised me to carry on reducing slowly.
Surely the small doses I take now are topping my body up with anti inflammatory mediators. There is absolutely no way I could suddenly stop the steroids now and the pain in my buttocks is 100 % PMR pain which is relieved by the extra 1mg although it takes a couple of days to kick in.
Not everyone has a GP who thinks outside the box so i would welcome comments on this as some may be persuaded to stop steroids too quickly.
One of the most important aspects of living with PMR is too listen to your body and adapt to a slightly gentler lifestyle where possible especially in the first few months.
I took up sewing and have just finished my latest quilt art project which I attach to this post. Its Marloe Sands in Pembrokeshire where we went on a walking holiday this year.
However now, I am almost back to normal activities so there is a light at the end of the tunnel !!!