Off Prednisone for PMR

Welcome @wilmingtonemperor, You are not alone. Nobody wants to take prednisone but it is the defining drug that if the pain goes away shortly after you take it, it is one of the methods used to diagnose that you have PMR. You might want to check out other discussions in the Polymyalgia Rheumatica (PMR) Support Group listed here:
https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

I've had two occurrences of PMR. I was started at 20mg prednisone for both. Fortunately I was able to taper off both times, although it did take me 3 and half years the first time. Much easier the second time since I made some lifestyle changes and started eating healthier, eliminating as much sugar as possible (hard on my sweet tooth). My rheumatologist had me keep a daily log with my level of pain when I woke up along with my prednisone dose for the day. Do you keep a daily log?

I do not keep a daily log but even off prednisone entirely, I able to function well with a Tylenol. I will tell you that my doc said no more alcohol so that is a plus. I am also 20+ pounds lighter and that has made a big difference.
Have you heard of Kevzara just approved for PMR? It is a twice a month injection with a pen injector and the clinical trials have been very, very positive. I would absolutely use a twice month protocol over prednisone

I have not used Kevzara (sarilumab) but there are a few discussions on the treatment where others have shared their experience.

--- PMR & Kevzara: https://connect.mayoclinic.org/discussion/pmr-kevzara/
--- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/
--- PMR treatment w Kevzara: https://connect.mayoclinic.org/discussion/pmr-treatment-w-kevzara/

So I am now off prednisone entirely for 2 whole weeks and while I continue to wake up with stiffness in my hands, wrists and neck, the morning Tylenol does its thing and I function well all day. to give it a rating I would say I am OK. I do CrossFit two mornings a week for the last 7 years and I would recommend it to any senior dealing with PMR. I would like to hear from others with PMR who are off medication entirely and their experiences post prednisone

I’m off prednisone five days now, and my right shoulder pain is terrible. My arm is swollen too, but I believe this is from a prior arthritis problem I’ve had with my neck and shoulders. So far, so good!

I'm off prednisone for 5+ years now and still wake up with some stiffness and aches but mostly related to degenerative arthritis. Exercise is the key to staying mobile and after I'm up and moving feel fairly well. I use a FreeStep Cross-Trainer Recumbent bike 4 to 5 days a week for about 30 to 45 minutes which helps this 80 year old body move a little better.

John; thanks for your input and good for you being off prednisone for 5 years. I hope I candy the same thing in 5 years. You and I agree that keep moving is very important. It is too easy to say I'm hurting so not today.

Took me a year working with an endocrinologist to get off methypred. We used hydrocortisone in lieu of until I could make the break. I miss the medrol every single day as I am not on anything but coated aspirin which doesn't touch the pain but I also have pain/fatigue from post polio syndrome. But I escaped diabetes but not osteoporosis from 12 years on pred/medrol but it did help the pain and ease of movement. Shame it is so destructive otherwise.

BTW, my dermatologist with R/A found articles about metformin being used for r/a and has gotten relief from that. I found the articles she mentioned which were mainly S. Korean doctors. I will ask my rheum. about this possiblity at next appt.

I was diagnosed with PMR in March of 2021. I started on 20 mg prednisone a day at that time. By June 1 of 2023 I had tapered down and I took my last dose of 1/2 mg, of Prednisone. The first 2 weeks were hard, pain and stiffness, but nothing that was bad enough to get me to go back on prednisone. I was starting to be able to sleep at night again. I still have heavy sweating at times, and once in a while difficulty sleeping. But I am a 74-year-old female and expect some stiffness and restlessness. I have not yet regained all my energy from before PMR and don't know if I ever will. I am hoping to get completely well and not feel the effects of the illness anymore. I tend to get out of breath more than I ever did before and still have fatigue. Does it ever completely go away?

@floridabonnie. This Mayo Clinic site talks about some of the self-care that you can do to maintain your health.
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545
Are you on any other medications currently?
You asked about fatigue. It’s a fact of life with autoimmune diseases, but you can learn ways to manage it. The following is a discussion group on the “spoon theory” which explains the theory and how it came to be
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Simply put, you do what you can without running yourself in to the ground.
Read it and see if it will work for you!