1. < Polymyalgia Rheumatica (PMR)

Helpful morning routines

Posted by pdxmac @pdxmac, Jul 29, 2024

I'm wondering what morning routines others have discovered that help get through the morning aches and stiffness that accompany the agony that we call the tapering process. There are the obvious ones like gentle movement, stretching, that I employ daily - but I'm wondering if there are others that I just haven't figured out yet. I'd love to have an in-house masseuse but that isn't covered by insurance, sadly. ;-(

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aflik | @aflik | May 25 4:00pm
In reply to @joan7 "I started with PMR symptoms in 6/2020. I finally was weaned totally off Prednisone in 8/2024...." + (show)
@joan7

I started with PMR symptoms in 6/2020. I finally was weaned totally off Prednisone in 8/2024. My inflamatory markers were normal until 4/2025 (they were high). Next bloodwork, a week ago, my markers were back to normal. I'm wondering however if this is normal. Within the past week I have been having a lot of joint pain in my fingers and elbows and pain in my neck. I also wake up every morning with stiffness in my fingers. Is this a post inflamatory symptom to my markers going up? I do not have arthritis in my fingers or joints. Any thoughts?

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I’ve been trying to lower my dose of pred for over a year. I’m on Actemra Infusion once a month in to help me ween off, but each time I get to 2.5 - 3 mg the pain in my shoulders, lower back thighs returns, especially upon rising in the morning. . I’ve now at 3 mg for 2 weeks and I wanted to go back to 5 mg , which is my comfort zone. My Rheumatologist put his foot down and insisted I continue the taper, which drops to 2 mg next week. He’s concerned that I might never get off it and insists the Actemra will take over and that too will be eliminated eventually. I’m frustrated and I hope he’s correct, so I’ll keep on soldiering through. I’ve been on roller coaster for almost 2 yrs and pray I’ll turn a corner once I’m totally off prednisone, but there’s no guarantee.

REPLY
2 replies
joan7 | @joan7 | May 25 7:24pm
In reply to @aflik "I’ve been trying to lower my dose of pred for over a year. I’m on Actemra..." + (show)
@aflik

I’ve been trying to lower my dose of pred for over a year. I’m on Actemra Infusion once a month in to help me ween off, but each time I get to 2.5 - 3 mg the pain in my shoulders, lower back thighs returns, especially upon rising in the morning. . I’ve now at 3 mg for 2 weeks and I wanted to go back to 5 mg , which is my comfort zone. My Rheumatologist put his foot down and insisted I continue the taper, which drops to 2 mg next week. He’s concerned that I might never get off it and insists the Actemra will take over and that too will be eliminated eventually. I’m frustrated and I hope he’s correct, so I’ll keep on soldiering through. I’ve been on roller coaster for almost 2 yrs and pray I’ll turn a corner once I’m totally off prednisone, but there’s no guarantee.

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There is a really a good probability that the pain your experiencing is from coming down of the Prednisone. I grinned and bared it too and when I was coming down off the Prednisone, and when I was finally off of it my symptoms subsided. Hang in there, there is a really good possibility it could be the side effects of the Prednisone.

REPLY
mtr2601 | @mtr2601 | May 26 3:55pm
In reply to @aflik "I’ve been trying to lower my dose of pred for over a year. I’m on Actemra..." + (show)
@aflik

I’ve been trying to lower my dose of pred for over a year. I’m on Actemra Infusion once a month in to help me ween off, but each time I get to 2.5 - 3 mg the pain in my shoulders, lower back thighs returns, especially upon rising in the morning. . I’ve now at 3 mg for 2 weeks and I wanted to go back to 5 mg , which is my comfort zone. My Rheumatologist put his foot down and insisted I continue the taper, which drops to 2 mg next week. He’s concerned that I might never get off it and insists the Actemra will take over and that too will be eliminated eventually. I’m frustrated and I hope he’s correct, so I’ll keep on soldiering through. I’ve been on roller coaster for almost 2 yrs and pray I’ll turn a corner once I’m totally off prednisone, but there’s no guarantee.

Jump to this post

I also had trouble getting off the last few mg of Prednisone but persevered and got there. I was on 1.5mg for a few months before finally feeling well enough to stop. Morning rituals that help me are stretching and gentle movements while facing the rising sun, (wakes up cortisol production) bare feet on the grass, morning swims in summer. If the pain is bad, I take the stronger Paracetamol (only when absolutely necessary). A healthy anti inflammatory diet with plenty of protein to rebuild damaged muscles and tendons, quality probiotics to rebalance the gut.

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