You might want to consider looking for a different rheumy. He seems very unbending.

Your doctor is wrong I am sorry to say. It can affect the hands and feet in rare cases, like mine. Been dealing with this for 3 years. Nightmare for sure. tapered off few months ago, but then had to go back on 5 mg. Now tapering again and down to 2 mg. Bad drug but living with pain is not easy.

I'm sorry to say Rheumies, in general, seem to go for the fast taper, which does not work for me personally. Right now I'm hovering between 11.5 and 12.0 mg Prednisone. Feel crappy at 11.5 and good at 12. The pain started up again in backs of my arms, neck and shoulders.

Hands were also affected at the outset almost like carpel tunnel. Right hand looked like a claw and fingers were numb. Still do not have complete motion in middle finger right hand. Still use a soft rubber ball to exercise my right hand. Wore a splint for months. Prednisone started in Jan. 2022 was a miracle (after 5 months of it being diagnosed as "old age") and now trying to taper (at my own pace) in spite of what the Rheumatologist says.

Listen to your own body. I'm trying to drop down .5 every other Monday. It's amazing the difference just .5 mg can make. Sometimes I can, and sometimes I have to stay at a level for a few more days. It's not a race, but we do have to get off of it because of the side effects and because we do need our adrenal glands to kick back in (slowly). Some people take a couple of years to taper all the way down. No shame in that.

I have to say I can tolerate some pain, but get very antsy when the shoulder and neck pain start up. By backs of arms, I mean it's difficult to reach back to get dressed, to use washroom, etc. and yes, at one time, I could barely get on and off the toilet. Inflammation can build up again to where you have a whole flare-up. Thus, the slow taper.

Best of luck to you.

Hello @sharonanng and welcome to Mayo Clinic Connect. I am sorry to hear of your unpleasant experience with tapering so far, however, you do ask a really good question with regard to how much pain is too much when going through a taper. I think the answer to that may be very subjective given the varying pain tolerance levels of each person, however, understanding that a bit better may set you up for a better tapering process.

There was an existing discussion on dosages for PMR in the community already so you will notice I have moved your post here: https://connect.mayoclinic.org/discussion/pmr-dosages/

I did this so you may connect with other members who have PMR to get their feelings. Members such as @aspine @suetex @kimberlynitz66 and @tsc may be able to share more with you on your question.

Did you pose your question on amount of acceptable pain to your doctor? If so, what did you get for a response?

Pain in hip and shoulders remedied by prednisone sounds like PMR. And I wonder who the "we" is in "we don't do that." Prednisone doesn't cure PMR; it's supposed to cover the pain. If you're in pain you are not getting enough prednisone. Don't taper at all if you're in pain and 10% reductions are common. Slow and easy. Everyone is different and we can't follow a tapering schedule (unless that schedule works which would be indicated by little pain). I agree, no one wants off of prednisone more than me (and most all of us who are on it). You may want to find a rheumy who will work with you, not just with some schedule.

Hi, PMR hit me May 22, though I wasn't diagnosed for nearly a month. I was started at 15mg prednisone, which did very little for the pain. Then I was put on a course that started at 40mg/day, tapering down to 10mg. Once I got below 20mg, the pain came back full force. I can't get in to a rheumatologist til the end of October, so my neurologist--who treats PMR and GCA also--is covering me til then. After many fits and starts, she put me back up to 40mg for 2 weeks to begin a slower taper. That's worked for me. I hate being on prednisone and worry about such a high dose and am eager to get down (and then off) as soon as I can. What I've been told is that everyone is different; some people's PMR will resolve quickly, other's not. Some will respond to prednisone more quickly than others. It's a long road. It definitely sounds to me like you might benefit from a different, less rigid rheumatologist, though. Good luck.

My symptoms had been going for months before I could finally see a new rheumatologist. My prior one had put me on a drug I could not tolerate (never ran any tests, just said take this!). When I said I shouldn't handle the side effect, the response, sorry, I can't do anything more for you, you are too sensitive to medications. That's when my PCP recommended a new rheumatologist who has been great. She started me at 20mg of prednisone last November. I've have had ups and downs with tapering down. She is taking it very slowly. Hovered between 10-15mg for some time before I could taper any lower. I go down 1mg every 3-4 weeks. Because my inflammation markers would not come within the normal range, she put my on methotrexate (February). Finally had normal readings, pain was minimal. However, the methotrexate caused severe light headless. Currently off the methotrexate and at 5 mg of prednisone. I almost feel normal again. Still get tired and have to pace
myself. It is a slow process and it has taken over a year to get to this point. Long way of saying, a second opinion might be in order. Wish you well and hope you feel better soon!