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Off Prednisone for PMR

Posted by wilmingtonemperor @wilmingtonemperor, Sep 2, 2023

Hi; I am in Wilmington,NC and was diagnosed with PMR in January of 2023. I am a white, 82 year old male. I came off Prednisone 2.5 on Monday this past week. My doc says give it 2 weeks off the med and let's see how you are. Over all I have discomfort especially in my hands and wrists first thing in the morning but a Tylenol does its thing and I am pretty good for the day. Never having had something thing like this, I am assuming it will be chronic. I do not want to take anymore prednisone. My 78 year old brother's kidneys are failing after many years on prednisone for RA. If needed I want to go on Kevzara which was approved in Feb for PMR.

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floridabonnie | @floridabonnie | Sep 19, 2023
In reply to @becsbuddy "@floridabonnie. This Mayo Clinic site talks about some of the self-care that you can do to..." + (show)
@becsbuddy

@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!

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Thank you for your advice. I will try it. I thought when I went off prednisone, that I was all better and the PMR has gone away. I am finding that I don't feel all better. I will read up on the things you suggested and see if I can get help from the ideas presented there. Thank you.

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knyhus | @knyhus | Sep 21, 2023
In reply to @wilmingtonemperor "John; thanks for your input and good for you being off prednisone for 5 years. I..." + (show)
@wilmingtonemperor

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.

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I hope I can do the same and I hafta cut back on the candy!

The bod said no to alcohol (unequivocally -- multi-day, killer migraines) a few years ago, near the start of my PMR, so I'm off that, but sugar? Sugar is my last drug, and I like it far too much. Right now I can't imagine giving it up.

That said, I thought giving up wine would be hard, would leave me pining for wining, but it turned out to be more of a "meh; whatever." Surprising!

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1 reply
knyhus | @knyhus | Sep 21, 2023
In reply to @tarmansbks "Took me a year working with an endocrinologist to get off methypred. We used hydrocortisone in..." + (show)
@tarmansbks

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.

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Let us know what your doc says, eh? Thanks.

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knyhus | @knyhus | Sep 21, 2023
In reply to @floridabonnie "I was diagnosed with PMR in March of 2021. I started on 20 mg prednisone a..." + (show)
@floridabonnie

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?

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Good for you, Bonnie! I don't know the answer to your question but you are my role model for tapering off. Thank you.

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wilmingtonemperor | @wilmingtonemperor | Sep 21, 2023
In reply to @knyhus "I hope I can do the same and I hafta cut back on the candy! The..." + (show)
@knyhus

I hope I can do the same and I hafta cut back on the candy!

The bod said no to alcohol (unequivocally -- multi-day, killer migraines) a few years ago, near the start of my PMR, so I'm off that, but sugar? Sugar is my last drug, and I like it far too much. Right now I can't imagine giving it up.

That said, I thought giving up wine would be hard, would leave me pining for wining, but it turned out to be more of a "meh; whatever." Surprising!

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You know the easiest part was no alcohol. Doc made that very clear. Neither my wife and I are missing wine time and we are both down 20 lbs. However, ice cream is another story. Note, I am prednisone 1month and have had one flare.
Keep on truckin

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