1. < Polymyalgia Rheumatica (PMR)

PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

sharonanng | @sharonanng | Jul 31, 2022
In reply to @kmeikle1 "Pain in hip and shoulders remedied by prednisone sounds like PMR. And I wonder who the..." + (show)
@kmeikle1

Pain in hip and shoulders remedied by prednisone sounds like PMR. And I wonder who the "we" is in "we don't do that." Prednisone doesn't cure PMR; it's supposed to cover the pain. If you're in pain you are not getting enough prednisone. Don't taper at all if you're in pain and 10% reductions are common. Slow and easy. Everyone is different and we can't follow a tapering schedule (unless that schedule works which would be indicated by little pain). I agree, no one wants off of prednisone more than me (and most all of us who are on it). You may want to find a rheumy who will work with you, not just with some schedule.

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Rheumatologists are in short supply in my area. Fortunately, my primary care physician is also working with me and has a more flexible outlook. Thank you for your helpful comments.

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sharonanng | @sharonanng | Jul 31, 2022
In reply to @amandajro "Hello @sharonanng and welcome to Mayo Clinic Connect. I am sorry to hear of your unpleasant..." + (show)
@amandajro

Hello @sharonanng and welcome to Mayo Clinic Connect. I am sorry to hear of your unpleasant experience with tapering so far, however, you do ask a really good question with regard to how much pain is too much when going through a taper. I think the answer to that may be very subjective given the varying pain tolerance levels of each person, however, understanding that a bit better may set you up for a better tapering process.

There was an existing discussion on dosages for PMR in the community already so you will notice I have moved your post here: https://connect.mayoclinic.org/discussion/pmr-dosages/

I did this so you may connect with other members who have PMR to get their feelings. Members such as @aspine @suetex @kimberlynitz66 and @tsc may be able to share more with you on your question.

Did you pose your question on amount of acceptable pain to your doctor? If so, what did you get for a response?

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I did pose my question to both my rheumatologist and primary, and the answer I get is some, or little pain, but not debilitating. Still hard for me to ascertain what is acceptable while trying to balance the need to taper off Prednisone.

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1 reply
Amanda Roe | @amandajro | Jul 31, 2022
In reply to @sharonanng "I did pose my question to both my rheumatologist and primary, and the answer I get..." + (show)
@sharonanng

I did pose my question to both my rheumatologist and primary, and the answer I get is some, or little pain, but not debilitating. Still hard for me to ascertain what is acceptable while trying to balance the need to taper off Prednisone.

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@sharonanng I completely understand that. Perhaps you could use the pain scale from 0-10 and ask them where they think would be unacceptable during taper and following? I would be curious if a pain rating of 3, 5, 7 is acceptable. Could you consider using that as your way to communicate since that is typical already?

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ldingwall88 | @ldingwall88 | Jul 31, 2022
In reply to @sharonanng "I had COVID with mild symptoms in late December and soon after began having symptoms of..." + (show)
@sharonanng

I had COVID with mild symptoms in late December and soon after began having symptoms of muscle pain, general malaise, etc. I was diagnosed with PMR by a rheumatologist in early April. I was given 60 mg of Prednisone in the hospital for 2 days in a row. It was miraculous, and my debilitating pain disappeared. I went home on 30 mg of Prednisone and now am at 15 mg. My rheumatologist seems to think everyone responds to Prednisone in the same way. He has a program that he thinks everyone needs to follow. I tried to taper to 12.5 mg, but the pain was too severe. I am back to 15 mg and rheumatologist wants me to taper again to 12.5 mg. after two weeks at 15 mg. I would prefer to taper by a smaller amount, but he said we don't do that. I need to be at 10 mg before tapering less than 2.5. He did agree that if the tapering by 2.5 does not work this time, he will consider tapering less. I want to get off Prednisone more than he wants me to get off. But I am confused about how much pain is acceptable. Currently when I get up in the morning I have pain in hips, shoulders, arms and hands. It can be hard to stand from a sitting position, but I can tolerate the pain. Rheumatologist says neuropathy in hands and feet is not PMR.

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Hi, PMR hit me May 22, though I wasn't diagnosed for nearly a month. I was started at 15mg prednisone, which did very little for the pain. Then I was put on a course that started at 40mg/day, tapering down to 10mg. Once I got below 20mg, the pain came back full force. I can't get in to a rheumatologist til the end of October, so my neurologist--who treats PMR and GCA also--is covering me til then. After many fits and starts, she put me back up to 40mg for 2 weeks to begin a slower taper. That's worked for me. I hate being on prednisone and worry about such a high dose and am eager to get down (and then off) as soon as I can. What I've been told is that everyone is different; some people's PMR will resolve quickly, other's not. Some will respond to prednisone more quickly than others. It's a long road. It definitely sounds to me like you might benefit from a different, less rigid rheumatologist, though. Good luck.

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chefj | @chefj | Jul 31, 2022
In reply to @sharonanng "I had COVID with mild symptoms in late December and soon after began having symptoms of..." + (show)
@sharonanng

I had COVID with mild symptoms in late December and soon after began having symptoms of muscle pain, general malaise, etc. I was diagnosed with PMR by a rheumatologist in early April. I was given 60 mg of Prednisone in the hospital for 2 days in a row. It was miraculous, and my debilitating pain disappeared. I went home on 30 mg of Prednisone and now am at 15 mg. My rheumatologist seems to think everyone responds to Prednisone in the same way. He has a program that he thinks everyone needs to follow. I tried to taper to 12.5 mg, but the pain was too severe. I am back to 15 mg and rheumatologist wants me to taper again to 12.5 mg. after two weeks at 15 mg. I would prefer to taper by a smaller amount, but he said we don't do that. I need to be at 10 mg before tapering less than 2.5. He did agree that if the tapering by 2.5 does not work this time, he will consider tapering less. I want to get off Prednisone more than he wants me to get off. But I am confused about how much pain is acceptable. Currently when I get up in the morning I have pain in hips, shoulders, arms and hands. It can be hard to stand from a sitting position, but I can tolerate the pain. Rheumatologist says neuropathy in hands and feet is not PMR.

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My symptoms had been going for months before I could finally see a new rheumatologist. My prior one had put me on a drug I could not tolerate (never ran any tests, just said take this!). When I said I shouldn't handle the side effect, the response, sorry, I can't do anything more for you, you are too sensitive to medications. That's when my PCP recommended a new rheumatologist who has been great. She started me at 20mg of prednisone last November. I've have had ups and downs with tapering down. She is taking it very slowly. Hovered between 10-15mg for some time before I could taper any lower. I go down 1mg every 3-4 weeks. Because my inflammation markers would not come within the normal range, she put my on methotrexate (February). Finally had normal readings, pain was minimal. However, the methotrexate caused severe light headless. Currently off the methotrexate and at 5 mg of prednisone. I almost feel normal again. Still get tired and have to pace
myself. It is a slow process and it has taken over a year to get to this point. Long way of saying, a second opinion might be in order. Wish you well and hope you feel better soon!

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Teri | @tsc | Jul 31, 2022
In reply to @amandajro "Hello @sharonanng and welcome to Mayo Clinic Connect. I am sorry to hear of your unpleasant..." + (show)
@amandajro

Hello @sharonanng and welcome to Mayo Clinic Connect. I am sorry to hear of your unpleasant experience with tapering so far, however, you do ask a really good question with regard to how much pain is too much when going through a taper. I think the answer to that may be very subjective given the varying pain tolerance levels of each person, however, understanding that a bit better may set you up for a better tapering process.

There was an existing discussion on dosages for PMR in the community already so you will notice I have moved your post here: https://connect.mayoclinic.org/discussion/pmr-dosages/

I did this so you may connect with other members who have PMR to get their feelings. Members such as @aspine @suetex @kimberlynitz66 and @tsc may be able to share more with you on your question.

Did you pose your question on amount of acceptable pain to your doctor? If so, what did you get for a response?

Jump to this post

Hi @sharonanng and @amandajro, I had PMR first which gave way to Giant Cell Arteritis. I wasn't diagnosed for a year, then put on 40 mg prednisone, tapering on different schedules, down by 5 mg every two weeks, then 2.5 mg. Sometimes I stayed at one dosage for a month. My rheumatologist ordered monthly CRP blood tests, and once he told me to go back to the previous dosage because the inflammation increased. I'm now down to 1.5 mg prednisone, tapering by .5 mg every two weeks. I get some small pains related to GCA, mainly little head pains, a sore neck, but it's not worrisome and none of those all encompassing PMR pains have returned. When I had PMR, the pain and stiffness was on a scale of 10 out of 10, nonstop, day in and day out, plus no energy and no appetite. Now my pains are at the level of 2 and below. I have energy and feel pretty good. What my rheumatologist told me when I started tapering was, if the pain came back, to go back up to the previous two weeks' dosage, then start the taper again. So, as most members who have contributed to this discussion say, it's important to listen to our bodies. If you start a taper and it doesn't work, you can always go back up.

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jfannarbor | @jfannarbor | Aug 1, 2022
In reply to @flymetothemoon "Your doctor is wrong I am sorry to say. It can affect the hands and feet..." + (show)
@flymetothemoon

Your doctor is wrong I am sorry to say. It can affect the hands and feet in rare cases, like mine. Been dealing with this for 3 years. Nightmare for sure. tapered off few months ago, but then had to go back on 5 mg. Now tapering again and down to 2 mg. Bad drug but living with pain is not easy.

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I am not sure how bad 2 mg of prednisone can be. I have been on 2.5 mg for 5 to 10 years. The side effects I see are easy brusing and thin skin which bleeds easily if I get scraped. I have posted on this site two scientific, published medical articles that show that long-term prednisone is not bad. Here is one of the studies that I can easily find: "Low-Dose Prednisone Therapy of the Patient with Early Active Rheumatoid Arthritis: Clinical Efficiency, Disease-Modifying Properties, and Side Effects" A Randomized Double-Blind, Placebo-Controlled Clinical Trial. The other study that I cannot find right now was a Rheumatologist who followed his patients for, I think, 25 years and noted no problems with under 5 mg of prednisone. The complete reference is Ann Intern Med 2002; 136: 1-12

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1 reply
jfannarbor | @jfannarbor | Aug 1, 2022
In reply to @jfannarbor "I am not sure how bad 2 mg of prednisone can be. I have been on..." + (show)
@jfannarbor

I am not sure how bad 2 mg of prednisone can be. I have been on 2.5 mg for 5 to 10 years. The side effects I see are easy brusing and thin skin which bleeds easily if I get scraped. I have posted on this site two scientific, published medical articles that show that long-term prednisone is not bad. Here is one of the studies that I can easily find: "Low-Dose Prednisone Therapy of the Patient with Early Active Rheumatoid Arthritis: Clinical Efficiency, Disease-Modifying Properties, and Side Effects" A Randomized Double-Blind, Placebo-Controlled Clinical Trial. The other study that I cannot find right now was a Rheumatologist who followed his patients for, I think, 25 years and noted no problems with under 5 mg of prednisone. The complete reference is Ann Intern Med 2002; 136: 1-12

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I found another article about low-dose and long-term prednisone usage. It is in The American Journal of Medicine vol 96 feb 1994 page 115 to 123. It notes no adverse events below 5 mg per day. I still can't find the one published article where a MD followed patients for about 25 years and found a similar result.

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nkdonahue | @nkdonahue | Aug 1, 2022

My husband had to go to 24mg of methyl prednisolone (stronger form of prednisone) before he had complete relief of his PMR symptoms. He didn't want a higher dosage, but it was what worked. He has tapered down to 16mg after 8 weeks and still feels good.

I hope you find your way to being pain free.

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elizabethjoan | @elizabethjoan | Aug 3, 2022

Hi. I am new to PMR...diagnosed July 12. I take my prednisone at 9:30 and find it does not really take effect until about 1pm. It wears off by 4 am. I then take ibuprofen and acetaminophen to get me through the night and allow me to get up in relative comfort in the morning. My blood pressure is fine.
Does anyone else supplement with OTC's? Is this an OK thing to do?

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