1. < Polymyalgia Rheumatica (PMR)

Post prednisone

Posted by shannonjp @shannonjp, Feb 24 5:26pm

Today marks the 24th day since I tapered to zero prednisone. I did my taper very slowly, dropping 0.5 mg per month since June of last year. From the time I reached 5 mg I started to experience some aches and stiffness which would last ~3 weeks but was mostly manageable with acetaminophen. I persevered because I have osteoporosis so I was very anxious to get off the prednisone.

Several days ago I realized that my aches, pains and discomfort were really diminishing. But I’ve also noticed a sense of fatigue and muscle weakness I didn’t have during my taper. I went down a step and felt like my knee was going to buckle. This despite the fact that walking has been my primary exercise throughout my 2 year bout of PMR. I’m hoping this is normal as my body continues to adjust to life without prednisone.

Has anyone who has tapered off of prednisone gone through something similar? Should I be worried or just continue to be patient?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

wilmingtonemperor | @wilmingtonemperor | Apr 1 2:40pm
In reply to @shannonjp "Two month update. My improvement has continued slowly. At 5 weeks I started waking up stiff..." + (show)
@shannonjp

Two month update. My improvement has continued slowly. At 5 weeks I started waking up stiff but not overly painful. My back and neck (arthritis & degenerative discs) continued to be the focus of my discomfort.

At 6 weeks even that discomfort lessened but then I noticed “fatigue” in my thighs and knees. After about a mile of walking my legs would feel as if I’d gone on a 10 mile hike. I also had trouble getting up off the floor.

Now at 8 weeks I’m still improving. Most days I don’t have to take any pain meds and I feel less of the fatigue and achiness. Overall I’m just ecstatic to be off the prednisone.

Jump to this post

Hi, congratulations on getting off prednisone. I have been off since Jan 9 after being on it just short of a year. However, from October 23 until mid Feb 24, I was also on Kevzara to ease ending prednisone. I am off everything now for the past 7 weeks. I am stiff for about an hour after I get up but once moving around I loosen up. I walk the dog twice a day and do CrossFit twice a week. I can deal with a little stiffness at 82 to be off prednisone.
Good Luck

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shannonjp | @shannonjp | May 31 2:06pm

4 month update. What a crazy roller coaster ride! I am happy to report that I continue to improve. It has not been steady though. I remained extremely stiff and painful until about 3 weeks ago when I woke up one morning and was able to lift myself out of bed normally without having to roll over and push.

Two weeks ago I braved getting a Covid booster after an unexpected exposure 10 days before that. I woke up the next morning in as much pain as I’ve ever been in but it only lasted the one day. Since then I’ve continued to get better. I’m only taking Tylenol occasionally now and am regaining some of my lost strength. I recognize that this is remission not cure but I’ll certainly take it.

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cazwell50 | @cazwell50 | Jun 1 7:12pm

I stopped prednisone 6 months ago. While tapering stiffness and some pain followed me. I still have stiffness but very manageable although working out what I can push myself to do is still complex. As for fatigue I only commented yesterday to my partner that the grinding fatigue seems to have lifted so that’s one less issue. Muscle strength is taking more work and time but progressing.

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tuckerp | @tuckerp | Jun 1 8:36pm
In reply to @hunib33 "@nyxygirl. I did not split my doses. I took the dose for that day the same..." + (show)
@hunib33

@nyxygirl. I did not split my doses. I took the dose for that day the same time I did every day (within minutes). That was successful for me. Also I was not treated by a rheumatologist, my Internist was very familiar with PMR and her approach was different from most of the posts I read on this site. I started with an aggressive dose of prednisone for about 12 days, she smacked PMR in the mouth right off the bat, and I think my taper was successful because of that. 😅 All the best with your journey. Be patient.

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hunib33. I know this is an old thread. I just started coming here a couple weeks ago. I have been off steroids for 2 yrs. But I have had a flare. I was hoping that was behind me. I agree with your approach. Slap this thing aggressively and be done within 10-14 days before you shut down cortisol production. I think I could probably just taper to zero within the 14 days. I am familiar with Dadcue and his similar approach to Uveitis. When you say aggressive what dose did she start you on?

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