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@njtodctode

You have totally summed up what has gone.on for me...I need to talk to my rheum. We are just reducing even tho symptoms are there. I love that your doc said if you reduce too soon it makes it worse because that is totally true!! I would assume...you know better than I that at the top dose you should be close to pain free (relatively speaking) before you start.reducing....and then reduce after things.are steady for a bit. This is not a linear disease. I need to hear what my doc says healing is....so you take the pred then what.happens
What is getting better? Anyway finding this site. has been the best learning experience. I have such gratitude for you all already! Be well...take it slow.and hang in. Hugs...m

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Replies to "You have totally summed up what has gone.on for me...I need to talk to my rheum...."

From what my dr said, you need to be mostly pain-free before stepping down. I'm at about 90% so I'd like to try it now, but she's not convinced that I've given it enough time to totally calm down the flare--and the last thing I want is to have to start all over again so I'm trusting her. A lot of people on this site have talked about how their drs (rheum, neuro, GP) focus on getting off prednisone to the exclusion of almost everything else. I know it's a toxic drug, but to me, the worst thing would be taking just enough to lower the pain but not enough to actually eliminate the inflammation. (Almost like only taking enough antibiotics to alleviate the symptoms of an infection but not enough to eradicate the infection itself.) It's such a hit-and-miss. Some days I have very little PMR pain, then others smack me right back down. Like you say, not linear. I hope your rheumatologist is responsive to your concerns. This site has been amazing! I felt totally alone until I found it. Feel free to reach out anytime and take care. -Leigh