Diagnosed PMR 2017, can I get off prednisone?

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.

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!

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.

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.

@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.

question to some of these great suggestions/comments makers. I am also female, North European. Including OP, wow you are in great shape, but indeed I would also be worried about the long term prednisone. effects.
Diagnosed January 2026 great pain and refused prednisone until March when I could no longer walk up stairs. Started 30MG and tapered each 7 days by 5MG. Now at 10 and will try 5 after weekend.
Does anyone know/think that when tapering, it is OK to have some level of pain? I can accept 2-4 of 10 if this means no more prednisone. Or better to slow the tapering to adjust for zero pain?