1. < Polymyalgia Rheumatica (PMR)
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Diagnosed PMR 2017, can I get off prednisone?

Posted by sikesrunner @sikesrunner, Oct 14 9:51am

I am 5 foot 2 inches, European descent, female. I was diagnosed with PMR at age 55, after completing Chattanooga Ironman 2017. I was taking second dose antibiotics for bad sinus infection at the time of Ironman race. Shoulder and hip joint soreness and stiffness wouldn’t go away after race. Went to my general practitioner and then assigned rhuemotologist in December 2017. Went through regiment of prednisone from 15mg/day down to 3 mg/day over 2 years. I reduced prednisone amount to 1.5 mg/day over next year. Rhuemotologist informed me not to reduce further. I’ve been on 1.5mg/day prednisone since 2020. I have not had a PMR relapse since diagnosis. I have completed 26 marathons, ten 50km trail races, one 12 hour run and two 100 mile races (2024 and 2025) since being diagnosed with PMR. I also completed 10 day hike, Tour Mont Blanc. I would like to get off prednisone and my rhuemotologist doesn’t want me to do this for concern I may have relapse of PMR or develop giant cell arteritis. Rheumatologist will not help me get off of prednisone. I am concerned of effects of prednisone over time on my immune system and bone density. I eat very healthy, get my sleep, do not drink or smoke, and would like to get off prednisone.

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sikesrunner | @sikesrunner | Oct 16 9:49pm
In reply to @katrinabradley "Amazing sporting achievements, well done. I am a keen fit cyclist and swimmer. I was diagnosed..." + (show)
Profile picture for katrinabradley @katrinabradley

Amazing sporting achievements, well done. I am a keen fit cyclist and swimmer. I was diagnosed with PMR in early August this year and have been able now in October to taper to 3mg. May I suggest trying to find a bioenergetic practitioner who is a professional trained to work with the body's energy and information fields, helping to identify and address energetic imbalances that may affect physical, mental, and emotional health. My bioenergy practitioner places the prednisone tablets on my stomach while I lie on the bed, she can determine how many mg and for how many days I should take them. My rheumatologist had me on a prescription to taper me off the steroid over 6 months, but with the bioenergry practitioner, I may be off them in half this time. Doctors and rheumatologists often follow the norm, whereas bioenergy is targeted to the person, and your own body tells you what it can tolerate and what it can't. During the session, we tested my fish oil capsules, calcium supplements, turmeric and vitamin D3. My body indicates that the fish oils and calcium are currently of no benefit to me. I strongly urge everyone who has PMR to go to a bioenergy specialist. One last thing, I mentioned that I am fit, but would you believe one of the bioenergy sessions revealed that for now I should stop my swimming, pilates and yoga. Being honest, I wasn't feeling great afterwards. Thankfully, my cycling was a positive and I regularly do 150km + . Wishing you and all a speedy recovery.

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@katrinabradley Thanks for the feedback. I’ve come across a PMR group member that provided a prednisone tapering schedule by 1/4 mg increments. I’ve adjusted it for a more conservative reduction per week. Hope to be prednisone free by January 2027.

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sikesrunner | @sikesrunner | Oct 17 6:29am
In reply to @jeff97 "That's great you've been able to train for and compete in so many long races. I've..." + (show)
Profile picture for jeff97 @jeff97

That's great you've been able to train for and compete in so many long races. I've been running for almost 50 years, but it has been about 15 years since I was able to do long runs and races.

Your rheumatologist seems awfully conservative. Usually it's the other way around. They try to get people off of prednisone too quickly. Most websites say that PMR lasts 1 - 2 years for most people, but it can last longer, Five years is pretty long for PMR. Websites say it is a self limiting disease, meaning it eventually burns itself out. If I were you I would try to get off it and see what happens. Worst case you can start taking low dose prednisone again. It would take quite a bit of time before GCA could develop to a dangerous level, and you could restart treatment before that happens.

One big issue for you might be adrenal insufficiency. After being on prednisone for so long, it might take a long time for your adrenals to become fully active again. I take weekly Actemra injections for GCA and PMR, and I also took prednisone for a little over a year, until I stopped 2 months ago. Beginning at 5 mg, I tapered one mg every 4 weeks. I didn't have any adrenal issues until a couple of weeks after I stopped the prednisone. I had some problems for about 4 weeks, with fatigue, sleep problems, and mood swings. But the problems were mild to moderate.

I was very surprised about how I felt after tapering from 1 mg to 0. I didn't expect to feel much different, but it did make a big difference in my metabolism. I felt like myself again, where I could eat as much as I wanted and not have to worry about gaining weight.

I'm very envious that you can perform so well in distance races. Enjoy the training and the races!

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@jeff97 Thanks for the information Jeff. I have developed a prednisone reduction schedule based on PMR group member reduction schedule of 1/4 mg reduction and 6 week period of staying on new, low dose. I hope to be prednisone free by January 2027.

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sikesrunner | @sikesrunner | Oct 17 6:37am
In reply to @cyndiefromnc "I'll say it again. There are quite a few extremely active PMR patients. I wish we..." + (show)
Profile picture for cyndiefromnc @cyndiefromnc

I'll say it again. There are quite a few extremely active PMR patients. I wish we could all partake in a study. Congrats on hanging in there @sikesrunner. I'm 68. My marathon days are over but I'm still running, walking, cycling and lifting.
I agree with all of the comments. Your rheumy is too cautious. Good luck.

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@cyndiefromnc Thanks Cyndie. I have appreciated all of the comments I have received. I have an appointment with a different rheumatologist mid November. I also developed a prednisone reduction schedule and hope to be prednisone free by January 2027.

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jabrown0407 | @jabrown0407 | Oct 17 6:44am

I have been on a low dose for what I would consider an extended time, but not years like you. If you do try to titrate down I would suggest you try alternating days on the dosage. Say you want to move from 1.5mg to 1mg. Do a month of taking 1.5mg on day one, then 1mg on day two, then 1.5mg on day three, etc. If you can do this for 30 days without problems then move to 1mg per day for 30 days or more. Then alternate again between 1mg and 0.5mg per day, etc. I had problems going below 2mg so I went to this approach and it worked for me. I had to go by 0.25mg drops because a 0.5 drop was too much for me - but it worked and was worth it in my opinion.

Tell your doctor that you realize you are doing it against his best advice. Ask him if he can support your personal need to go off prednisone. In the end it is your body and your decision. Let us know what happens going forward.

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mtlin | @mtlin | Oct 19 11:48am
In reply to @katrinabradley "Amazing sporting achievements, well done. I am a keen fit cyclist and swimmer. I was diagnosed..." + (show)
Profile picture for katrinabradley @katrinabradley

Amazing sporting achievements, well done. I am a keen fit cyclist and swimmer. I was diagnosed with PMR in early August this year and have been able now in October to taper to 3mg. May I suggest trying to find a bioenergetic practitioner who is a professional trained to work with the body's energy and information fields, helping to identify and address energetic imbalances that may affect physical, mental, and emotional health. My bioenergy practitioner places the prednisone tablets on my stomach while I lie on the bed, she can determine how many mg and for how many days I should take them. My rheumatologist had me on a prescription to taper me off the steroid over 6 months, but with the bioenergry practitioner, I may be off them in half this time. Doctors and rheumatologists often follow the norm, whereas bioenergy is targeted to the person, and your own body tells you what it can tolerate and what it can't. During the session, we tested my fish oil capsules, calcium supplements, turmeric and vitamin D3. My body indicates that the fish oils and calcium are currently of no benefit to me. I strongly urge everyone who has PMR to go to a bioenergy specialist. One last thing, I mentioned that I am fit, but would you believe one of the bioenergy sessions revealed that for now I should stop my swimming, pilates and yoga. Being honest, I wasn't feeling great afterwards. Thankfully, my cycling was a positive and I regularly do 150km + . Wishing you and all a speedy recovery.

Jump to this post

@katrinabradley thanks for your suggestions - when I google bioenergy specialist, I get renewable energy websites (lol) -- do have another name suggestion? Thanks

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