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

@lori0570

I am 84 years old and have been having severe pain in hips and back for almost a year. Diagnosed with severe arthritis of the hips and stenosis. Could not have hip replacement because of other issues. On several pain medicines which really don't help. Yesterday laying in bed trying to sleep I thought back to 15 years ago when I was diagnosed with PMR and it lasted for over two years. Went from 20 mg to 5 until I finally got off of it.. I had some prednisone that I took, 20 mg and the pain went away. I believe that I have relapsed. Don't know why the doctor didn't think of that as it is in my records and he told me once it could come back. Anxious to get up in the morning and call him to see if the tests can be done. Has anyone else relapsed after this long a period? Any one else have that long a time between relapsing? Hate to think of going through this again but I was unable to walk and spent most of my time in a chair. At least taking the prednisone I am up and around and even walking.

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Hello @lori0570, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I think the answer is yes, PMR can come out of remission and with a vengeance some times. Mine went into remission for 6 years and I had to go back on prednisone for about a year and half. Your doctor can order some lab tests – Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are blood tests that can be used to check the levels of inflammation in your body to see if they are high.

Did you have some left over prednisone that you took and it made the pain a little more bearable? You might want to check with your doctor because most medications, including prednisone, have a shelf life and may not be safe to take after they are expired.

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@johnbishop

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it’s not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It’s easy for those that have trouble or don’t like walking because it has a larger seat and pedals so doesn’t cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John

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It was impossible for me to exercise. I finally felt stable enough (started 10 mg Prednisone July 19, 2021) to try 3 min on treadmill 3 x's a day..so about 10 min. I did this for 5 days. Terrible symptoms, not the full set, but back muscles very tense and aching. I talked to Rheumatologist. She said stop for a bit…too much from zero to 10 min for my body it seemed. It took me 2 weeks to get free completely of any of those effects! I marvel at those who can exercise. So far, no way. I am 77. I do have arthritis in left foot that requires prednisone shot every 3 months and my right knee is very arthritic. Also requires prednisone every 6 months or so and the gel annually. So, those also need to be in line (those joints) for me to even try to exercise. Pretty much reluctant to do any thing. JUST starting the taper this week from 10 mg to 9 mg. We will check in weekly to see when/if I can reduce further but week by week check in with my doctor. Thanks for all the good sharing here.

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I had my first occurrence of PMR in 2008, which was thirteen years ago. It resolved the same year and I was pain free for thirteen years when I had a recurrence after receiving the Pfizer vaccine for Covid.

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@scpartain

I had my first occurrence of PMR in 2008, which was thirteen years ago. It resolved the same year and I was pain free for thirteen years when I had a recurrence after receiving the Pfizer vaccine for Covid.

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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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@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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@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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@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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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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@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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