PMR - Decreased prednisone and pain returned

I have been tapering at 1 per month from 10 in January, now at 5. I went from waking up at 0400 at 10, to now sleeping uninterrupted for 9 hours while on 5. Also…hand and wrist pain between 8 and 6, now essentially gone. At 5, my taper was reduced to 0.5 per month.
Once your inflammatory markers (SED, CRP) are normal any pain you are having is probably not PMR, and therefore you should avoid increasing prednisone or stopping the taper if possible. Tylenol can help, and I had some success with CBD cream on my hands. NSAIDS are the best choice for non-PMR inflammations, but they conflict with prednisone and should only be used if you are way down on prednisone…AND…your doc approves considering the drug conflict.
Good luck to all.

My rheumatologist told me the opposite. She said if I’m still experiencing pain, PMR is still present. I don’t know who to believe anymore.
I have tapered down on Prednisone to 3.5 mg. I found that tapering by 1/4 mg at a time and staying on it for two weeks works best for me. I do have some minimal pain, mostly in my arms. But it has not increased.
I plan on having my adrenal glands tested when I get down to 3 mg. This has been a two-year journey for me.

I was never sold the idea that I would be "pain free." I was told the pain would be managed with prednisone and the pain would be more tolerable. Yes ... the pain was more tolerable when I took enough prednisone but never was I pain free during the more 12 years I took predisone.

I was able to taper off prednisone. My steroid withdrawal symptoms were rather painful. I had to keep reminding myself that PMR was in remission. After being off Prednisone for almost 3 years ... I still have some pain but the symptoms aren't anything like the onset of PMR.

I sympathize. Same situation here except I was only down to 7.5 mg from 15. Went down another 1/2 mg to 7 and was in severe pain again...shoulders and arms mostly. So I went back up on dosage and am now back to 10 mg with no significant improvement. Still waking up with the horrible "locked-up" pain and stiffness in my shoulders. Very discouraged.

Perhaps you were never on high enough of a dose for an adequate time to put PMR into remission before your taper was started. I was on 30 for a month before tapering at 5 per month to 10, then 1 per month to 5, and now on 1/2 per month until 0. I have been fortunate to not have ever had the apparent relapse experiences you are having. You might consider getting a second opinion from another qualified doc. Best of luck to you.

Getting past the 7 mg prednisone barrier can be very difficult. I had the same problem. Adrenal insufficiency was causing my problem. Symptoms seem to arise when people taper down to this 7 mg dose of prednisone.

I didn't know this. Thanks for the info. My rheumatologist is moving the end of this month. He's referred his 3,000 patients to a local group of rheumies but they can't see me until September. 🥺

Thanks. I'm sorta stuck for now bc my rheumatologist is leaving the end of this month and the new practice can't see me until September.

I would not accept being “stuck” if you are having severe pain. Presuming your pain is PMR, it is probably treatable by some dose of prednisone. I would therefore be getting past whoever at the new rheumy practice is telling you that you cannot be seen until September, or going to my primary care doc. You need to get ahead of their other patients that are NOT in severe pain. It is also possible that 10 mg will have an effect after being on that dose for at least 5 days. Do not be happy with the status quo. Cause some doors to open to help you. Good luck !

Thanks! I am taking prednisone now as i have been for almost 18 months. All was fine until i tapered down to 7. That's when the pain came back with a vengeance. I've gone back up to 10mg. Crossing fingers!