I have been on 0 mg pred for 1 week now. And I am feeling good. No pain, and only Occassionally a slight stiffness when I stand and for the first couple of steps. Hooray!
I am surprised every day I wake up and still feel good. I know there is no guarantee that this will continue-but I am very hopeful.
My story is highly unusual. I was down to 3 mg, for about 3 weeks, when I noticed I felt better in the morning when I first got up, and then felt worse after taking my pred. I decided to try a brief experiment of not taking my pred in the morning and waiting to see how far into the day it would take before I noticed symptoms returning. They never came, not even by the next morning, so I waited again, and again. And, here I am one week later, not having had any prednisone.
Please know that I reread all the information on adrenal crisis symptoms before I tried this experiment and made sure my husband and another relative knew what I was doing and what symptoms to watch for that would indicate a problem.
I was on prednisone for 117 weeks (2 years, 3 months). For 9 months I had been at 5.5 mg or 5 mg. Then, the first of this of the year I started reducing again every 2 weeks or so. Just a month ago I was trying to toggle between 4 and 3.5 and having good days when on 4 and my body was screaming for its extra 1/2 mg on the 3.5 days,
I did notice a major shift in how I felt last August. All of my joints seemed to have much more freedom of movement. At times I would wiggle my feet back and forth and around, or wave my arms up, down, around, twisting in the air in pure joy that they felt so free to move.
Perhaps being at the 5.5 to 5 mg pred level for so long allowed my adrenal glands to kick back in and my body was ready to work again.
I see my Rheumatologist and get CRP and SED rate done in one month.
I'm still in a bit of disbelief that I am here, at zero. On day 4, I cried several times. It was just so emotional to think that this PMR journey might really be coming to an end.