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.

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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@johnbishop

Hi @kimberlynitz66, Welcome to Connect. Tapering off of prednisone for PMR can be very difficult and needs to be slowly. Usually if my pain symptoms returned when I had tapered down, I tried upping the dosage by half of the previous taper so it was still less than the previous dose. Each of us are different but I think you are still early in your PMR being diagnosed in March. The first my PMR came out it took me 3 and half years to taper off. The second time 1 and half years. You will notice that we moved your post to an existing discussion on the same topic here:

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

You might want to jump to the top of the discussion by clicking the link above and read through the posts of what others have shared to see if anything rings a bell for you. Do you keep a daily pain log and dosage to help you keep track of your tapering?

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Hi Everyone,
I am new to the group and was diagnosed with PMR by my rheumatologist in May. I also have degenerative disc disease and really thought my new hip pain was a consequence of the progression of issues with my lumbar spine. My CRP and Sed Rate were both crazy high and that convinced both myself and my ortho that something else was happening. I have had minimal shoulder pain but have had significant neck and upper back pain & spasms. My question is that my initial dose of prednisone brought immediate relief at 15 mg but within about 5 days the pain returned. My dose was increased to 20 mg but I have not had the kind of complete relief that I felt originally. Should I expect to be pain free or just better than I was? I am experiencing some side effects from 20 mg so I am reluctant to increase the dose but I would also like to do what I can to facilitate remission. Your comments have been so helpful and I am thankful to have found this resource. Blessings!

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@sandiw77

Hi Everyone,
I am new to the group and was diagnosed with PMR by my rheumatologist in May. I also have degenerative disc disease and really thought my new hip pain was a consequence of the progression of issues with my lumbar spine. My CRP and Sed Rate were both crazy high and that convinced both myself and my ortho that something else was happening. I have had minimal shoulder pain but have had significant neck and upper back pain & spasms. My question is that my initial dose of prednisone brought immediate relief at 15 mg but within about 5 days the pain returned. My dose was increased to 20 mg but I have not had the kind of complete relief that I felt originally. Should I expect to be pain free or just better than I was? I am experiencing some side effects from 20 mg so I am reluctant to increase the dose but I would also like to do what I can to facilitate remission. Your comments have been so helpful and I am thankful to have found this resource. Blessings!

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Hi @sandiw77, Welcome to Connect. There are different conditions that can mimic PMR with similar symptoms and it can sometimes be difficult to diagnose. From my experience with 2 occurrences of PMR, after taking the first dose of prednisone in the morning, I was pain free within a few hours. I was usually good until the morning then would be a little stiff with a few aches until I started moving around and took the next dose of prednisone. I kept a daily pain log with the amount of prednisone I took that morning. When I started tapering, I wouldn't taper if my pain scale was above a 2 or 3. In those cases I sometimes upped my dosage by 1/2 of the previous taper to try and keep my taper going.

My second time around I started eating better and exercising a little more which I think helped me taper off sooner that the first time with PMR. Here's some information that might be helpful:
-- Can Diet Affect Symptoms of Polymyalgia Rheumatica?:
https://www.healthline.com/health/polymyalgia-rheumatica-diet

Are you about to discuss neck and upper back pain & spasms with your doctor or rheumatologist to see if they may have some thoughts on if it's related to PMR or not?

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@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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You might want to consider looking for a different rheumy. He seems very unbending.

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@johnbishop

Hi @sandiw77, Welcome to Connect. There are different conditions that can mimic PMR with similar symptoms and it can sometimes be difficult to diagnose. From my experience with 2 occurrences of PMR, after taking the first dose of prednisone in the morning, I was pain free within a few hours. I was usually good until the morning then would be a little stiff with a few aches until I started moving around and took the next dose of prednisone. I kept a daily pain log with the amount of prednisone I took that morning. When I started tapering, I wouldn't taper if my pain scale was above a 2 or 3. In those cases I sometimes upped my dosage by 1/2 of the previous taper to try and keep my taper going.

My second time around I started eating better and exercising a little more which I think helped me taper off sooner that the first time with PMR. Here's some information that might be helpful:
-- Can Diet Affect Symptoms of Polymyalgia Rheumatica?:
https://www.healthline.com/health/polymyalgia-rheumatica-diet

Are you about to discuss neck and upper back pain & spasms with your doctor or rheumatologist to see if they may have some thoughts on if it's related to PMR or not?

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Hi John,
Thanks so much for your response. It is all very confusing. I am keeping a pain diary just for my own clarity but will bring that to my next appointment with my rheumatologist. I have already spoken with him about the spasms and he indicates that spasms can occur with some PMR patients. In the meantime I will continue to track my pain and ask questions. I have also started to experiment with diet and am praying that it will help with my pain.

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@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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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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@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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I'm sorry to say Rheumies, in general, seem to go for the fast taper, which does not work for me personally. Right now I'm hovering between 11.5 and 12.0 mg Prednisone. Feel crappy at 11.5 and good at 12. The pain started up again in backs of my arms, neck and shoulders.

Hands were also affected at the outset almost like carpel tunnel. Right hand looked like a claw and fingers were numb. Still do not have complete motion in middle finger right hand. Still use a soft rubber ball to exercise my right hand. Wore a splint for months. Prednisone started in Jan. 2022 was a miracle (after 5 months of it being diagnosed as "old age") and now trying to taper (at my own pace) in spite of what the Rheumatologist says.

Listen to your own body. I'm trying to drop down .5 every other Monday. It's amazing the difference just .5 mg can make. Sometimes I can, and sometimes I have to stay at a level for a few more days. It's not a race, but we do have to get off of it because of the side effects and because we do need our adrenal glands to kick back in (slowly). Some people take a couple of years to taper all the way down. No shame in that.

I have to say I can tolerate some pain, but get very antsy when the shoulder and neck pain start up. By backs of arms, I mean it's difficult to reach back to get dressed, to use washroom, etc. and yes, at one time, I could barely get on and off the toilet. Inflammation can build up again to where you have a whole flare-up. Thus, the slow taper.

Best of luck to you.

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@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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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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@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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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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It is so difficult when you have multiple issues. I had complete relief when first diagnosed and put on 15 mgs. of prednisone in 2019. Three years later, it's sometimes difficult to distinguish bursitis and other hip issues (and how that messes with my body alignment) with PMR. You should feel mostly comfortable with PMR pain. If you are feeling PMR pain, you may be too low on the prednisone. If you're too low, the inflammation will accumulate and you'll have a flare. It can be tricky to figure out your body. Sometimes you have to experiment with dosage, timing, diet, etc.

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