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Diagnosed PMR 2017, can I get off prednisone?
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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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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1 ReactionWhat prevents you from stopping Prednisone other than your doctor saying not to reduce further after you reached 1.5 mg?
It sounds like PMR is in remission. The usual treatment is a slow taper and eventual discontinuation of Prednisone after remission is achieved. I understand that your doctor wants to prevent a relapse of PMR by keeping you on low dose Prednisone. Keeping a patient on a low, individualized maintenance dose to prevent relapse is a recognized and common clinical practice.
I certainly understand your concern for Prednisone side effects. There are other "steroid sparing" medications which don't have so many side effects that also may prevent relapses of PMR. The following discussion mentions a few other medications that might be options.
https://connect.mayoclinic.org/discussion/recommended-anti-inflamation-drug-not-prednisone-for-pmp/?pg=3
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I don't think such a low dose (1.5 mg) of Prednisone will prevent a relapse but that is only my opinion. I don't think 1.5 mg does much harm either.
I took Prednisone for 12 years for "relapsing PMR." I would commonly relapse at 7 mg but my pain would start increasing at 10 mg or less. My rheumatologist would have been thrilled if I could have been maintained on 3 mg or less. However, staying on a prednisone dose of 10 mg for the rest of my life was not a good outcome.
I have been completely off Prednisone for about 5 years but I take one of the steroid sparing medications listed above. I am extremely grateful that my rheumatologist wanted me off prednisone completely.
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2 Reactions@dadcue Thank you for the information on your own experience. I have set up a mid November appointment with another rheumatologist for a second opinion on becoming prednisone free.
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1 ReactionI also developed plantar fasciitis in both feet in 2023 when two weeks in bed with RSV. Summer 2025 a tendon in my hand ruptured putting up a 35 lb dumbbell in gym exercise room.
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1 Reaction@sikesrunner
A ruptured tendon might be a Prednisone side effect.
https://www.droracle.ai/articles/93977/effects-of-oral-steroids-on-tendons
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At least you were doing something when your tendon ruptured. I had a "spontaneous rupture" of the tendon connecting my thumb. The only thing I was doing was pushing a button with my thumb when my tendon ruptured.