1. < Polymyalgia Rheumatica (PMR)

How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

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scpartain | @scpartain | Sep 15, 2021
In reply to @priscillat "I am really sorry to hear that. Mine came back after the second Moderna shot. I’m..." + (show)
@priscillat

I am really sorry to hear that. Mine came back after the second Moderna shot. I’m still going to get the booster, when offered, because I’m hoping that being already on prednisone will blunt the reaction. That’s just hope, not medical expertise.

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Thanks for the reply. I also anticipate getting the booster when it is available, but I will discuss it with my rheumatologist before doing so. After a three month taper, I have been able to discontinue the prednisone, but I may need to resume it in conjunction with receiving another dose of the vaccine. I hope you are feeling better.

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priscillat | @priscillat | Sep 15, 2021
In reply to @scpartain "Thanks for the reply. I also anticipate getting the booster when it is available, but I..." + (show)
@scpartain

Thanks for the reply. I also anticipate getting the booster when it is available, but I will discuss it with my rheumatologist before doing so. After a three month taper, I have been able to discontinue the prednisone, but I may need to resume it in conjunction with receiving another dose of the vaccine. I hope you are feeling better.

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Three month taper? That’s a miracle! Mine was 14 months the first time; my practitioner is sloooowwwwinnnng it this time in hopes PMR won’t come back.

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scpartain | @scpartain | Sep 15, 2021
In reply to @priscillat "Three month taper? That’s a miracle! Mine was 14 months the first time; my practitioner is..." + (show)
@priscillat

Three month taper? That’s a miracle! Mine was 14 months the first time; my practitioner is sloooowwwwinnnng it this time in hopes PMR won’t come back.

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Both instances of my PMR lasted about the same amount of time, approximately six months. The rheumatologist advised a three month taper, depending on my symptoms. Fortunately the symptoms continued to subside even though I was decreasing the prednisone. Although I still have some residual pain in my shoulders and hips, it is not too bothersome and easily managed with a single dose of ibuprofen or Tylenol. I feel very lucky, but am worried about a recurrence with further vaccine shots or actually contracting the virus. The rheumatologist advised that people with autoimmune disorders like PMR tend to experience more severe cases of the virus. I wish you well in your journey.

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ajmencke | @ajmencke | Sep 16, 2021

I had Covid in August of 2020 and did not have PMR until I got the Pfizer vaccine and then it came on fast and was very painful. I did not get the second shot of vaccine. It has been 7 months and I'm tapering and down to 9 mg per day. My primary care physician had my antibodies measured. I have both antibodies from having Covid and from the vaccine and at a level that I don't need to have the second shot - yet. My doc is following the data and will decide if and when I need the second shot. She thinks that when I do need the second shot that it will be a different manufacturer. Meanwhile, my husband and I are following the precautions - wearing masks and distancing and avoiding enclosed spaces with people we don't know are vaccinated.

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leesasage | @leesasage | Sep 30, 2021
In reply to @johnbishop "Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed..." + (show)
@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I'm now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn't want it to get out of hand. I don't use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that's how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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Sorry to hear that predisone is a double edged sword

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milld835 | @milld835 | Feb 10, 2022
In reply to @johnbishop "Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed..." + (show)
@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I'm now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn't want it to get out of hand. I don't use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that's how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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John, I'm 100% pain free on 20 mg of Prednisone since Jan. 4/22. Do you think it's to soon to start titrating down by 2.5 at a time? So hard to get hold of the Neurologist and I don't actually get into the Rheumatology Clinic until earliest end of May.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 10, 2022
In reply to @milld835 "John, I'm 100% pain free on 20 mg of Prednisone since Jan. 4/22. Do you think..." + (show)
@milld835

John, I'm 100% pain free on 20 mg of Prednisone since Jan. 4/22. Do you think it's to soon to start titrating down by 2.5 at a time? So hard to get hold of the Neurologist and I don't actually get into the Rheumatology Clinic until earliest end of May.

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@milld835, I'm not a doctor and have no medical training but I've always been told by my rheumatologist and primary care docs that the goal of treating PMR with prednisone is to taper off slowly and listen to your body while tapering down. If I was pain free on 20 mg prednisone, I would definitely try tapering down by 2.5 mg while keeping a pain log with the daily dosage of prednisone. If I had minor pain/aches the following day (less that 2 on my pain scale), I would continue for a couple of weeks to see if the pain got worse or went away. Depending on how I felt, I normally adjusted up by 1 mg if the pain got worse or down by another 2.5 mg if I felt really good. Keeping a log will help you when you talk to your doctor.

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milld835 | @milld835 | Feb 10, 2022

Good, sound advice. Thanks John. Worth a try.

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juneh | @juneh | Feb 11, 2022
In reply to @johnbishop "@milld835, I'm not a doctor and have no medical training but I've always been told by..." + (show)
@johnbishop

@milld835, I'm not a doctor and have no medical training but I've always been told by my rheumatologist and primary care docs that the goal of treating PMR with prednisone is to taper off slowly and listen to your body while tapering down. If I was pain free on 20 mg prednisone, I would definitely try tapering down by 2.5 mg while keeping a pain log with the daily dosage of prednisone. If I had minor pain/aches the following day (less that 2 on my pain scale), I would continue for a couple of weeks to see if the pain got worse or went away. Depending on how I felt, I normally adjusted up by 1 mg if the pain got worse or down by another 2.5 mg if I felt really good. Keeping a log will help you when you talk to your doctor.

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Hi John...this info is very helpful. One question I've had is how long to stay on a particular dosage to see if the pain subsides. For example, right now I"m on 17mg. As mentioned before, I had a flare up when I ramped down from 20 to 15mg. I tried 16 and still had pain but 17 made a big difference. I'm not totally pain free (about a 1) but doing much better after two weeks on 17mg. In your experience, if you are doing pretty well (very little pain) and stay on the same dose, does the pain often level out after a while?? I'm going for a blood test today. Hoping I'm still in the normal range but I"m sure it won't be 0.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 11, 2022
In reply to @juneh "Hi John...this info is very helpful. One question I've had is how long to stay on..." + (show)
@juneh

Hi John...this info is very helpful. One question I've had is how long to stay on a particular dosage to see if the pain subsides. For example, right now I"m on 17mg. As mentioned before, I had a flare up when I ramped down from 20 to 15mg. I tried 16 and still had pain but 17 made a big difference. I'm not totally pain free (about a 1) but doing much better after two weeks on 17mg. In your experience, if you are doing pretty well (very little pain) and stay on the same dose, does the pain often level out after a while?? I'm going for a blood test today. Hoping I'm still in the normal range but I"m sure it won't be 0.

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Hi June, I know each of us are different with the pain levels. When I was tapering, I didn't mind living with a 1 or 2 level of pain for a week or so. I tried to taper every 2 weeks but on my first occurrence with PMR I had more trouble and it took me 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg (hated splitting the 1 mg tablets!) until I could finally go from 1/2 to totally off prednisone and still had about a 1 level of pain in the morning until I got up and moving. It got better for me as the day progressed.

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