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

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

Hello all PMR sufferers. I was diagnosed 6 months ago and was put on 15 ml. of prednisone per day for 6 weeks. Went to 10 ml. per day for 2 weeks and now I'm down to 5 ml. per day and experiencing some pain coming back in my left shoulder . I do not want to take more of the prednisone for the shoulder pain and was wondering if a cortisone injection at this time would be a better choice and keep taking the 5 ml of prednisone daily. I have found that taking my prednisone at 2 am works so much better for me as I am not stiff and sore as much when I get up in the morning. It does not effect my sleep as I have read that it can if taken at night.

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@limbmaker

Hello all PMR sufferers. I was diagnosed 6 months ago and was put on 15 ml. of prednisone per day for 6 weeks. Went to 10 ml. per day for 2 weeks and now I'm down to 5 ml. per day and experiencing some pain coming back in my left shoulder . I do not want to take more of the prednisone for the shoulder pain and was wondering if a cortisone injection at this time would be a better choice and keep taking the 5 ml of prednisone daily. I have found that taking my prednisone at 2 am works so much better for me as I am not stiff and sore as much when I get up in the morning. It does not effect my sleep as I have read that it can if taken at night.

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Welcome @limbmaker, It sounds like you could be tapering a little too much too fast. When it comes to PMR, no one likes to take prednisone but it is the magic bullet if you have PMR. It is normal to wake up with some aches and pains in the morning when you have PMR and the mornings dose should get rid of it within an hour or so if it is PMR. Here are a couple of reference articles that provide more information:

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429
--- 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative:
https://ard.bmj.com/content/74/10/1799

I've had PMR twice, both times I started at 20 mg prednisone. The first time it took me 3-1/2 years to taper off, the second time took me 1-1/2 years to taper off. My second time around was easier due to my changing my lifestyle by eating healthier, less inflammatory foods and sugar and exercising more. My rheumatologist also suggested I keep a daily log with my level of pain when I woke up and my dose of prednisone for the day which I think helped a lot to determine when the correct time and amount was to taper down. There is another discussion you also might find helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Do you keep a daily log?

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You may be coming down too fast. I just hit 10mg after coming down 5mg at a time starting with 40 mg in December. The last 10mg is the hardest. My drop from 10 to 9mg two weeks ago has been the hardest. I just gut through more pain to give it a few days to settle. I also take methotrexate once a week.

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@limbmaker

Hello all PMR sufferers. I was diagnosed 6 months ago and was put on 15 ml. of prednisone per day for 6 weeks. Went to 10 ml. per day for 2 weeks and now I'm down to 5 ml. per day and experiencing some pain coming back in my left shoulder . I do not want to take more of the prednisone for the shoulder pain and was wondering if a cortisone injection at this time would be a better choice and keep taking the 5 ml of prednisone daily. I have found that taking my prednisone at 2 am works so much better for me as I am not stiff and sore as much when I get up in the morning. It does not effect my sleep as I have read that it can if taken at night.

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I can’t tell the difference between PMR pain and arthritis pain, except that PMR was all consuming! I have tapered down to two mg of methylprednisolone from 16, in six months. No pain in the morning, but after two or three pm I’m a mess!

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@barracudacool

You may be coming down too fast. I just hit 10mg after coming down 5mg at a time starting with 40 mg in December. The last 10mg is the hardest. My drop from 10 to 9mg two weeks ago has been the hardest. I just gut through more pain to give it a few days to settle. I also take methotrexate once a week.

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Once you taper off the prednisone, how long will you need to be on the methotrexate?

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@marid57

Once you taper off the prednisone, how long will you need to be on the methotrexate?

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Doc said maybe a year. Better than prednisone but tapering down too fast of methotrexate could cause a major flare and a return to prednisone.

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@barracudacool

You may be coming down too fast. I just hit 10mg after coming down 5mg at a time starting with 40 mg in December. The last 10mg is the hardest. My drop from 10 to 9mg two weeks ago has been the hardest. I just gut through more pain to give it a few days to settle. I also take methotrexate once a week.

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I can only guess at the discomfort you must be in. I had to retreat to 1/4 ml of prednisone before I was able to progress. I am close to 1 ML right now but mornings are still a bit of a challenge. Don't be impatient, it may take time but you'll get there.

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I've had PMR for over a year and tapering is frustrating. Started at 20mg and easily got to 10mg and have tried twice to drop the dosage further... Got to 5 once but had to go back up due to pain. stayed at 7.5 for a few weeks, but Doc did blood tests and CRP jumped up too high so increased to 10 again. Stayed a month and CRP dropped down. Started tapering by 1mg every 2 weeks and was feeling pretty good at 8mg. had a plan to keep dropping by 1mg, but Doc called with blood tests and CRP jumped again, so back to 10mg. Anybody have this problem? What did/are you doing? Anyone successfully get off pred after the tapering seesaw like this? How long did it take?

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@kaydall

I've had PMR for over a year and tapering is frustrating. Started at 20mg and easily got to 10mg and have tried twice to drop the dosage further... Got to 5 once but had to go back up due to pain. stayed at 7.5 for a few weeks, but Doc did blood tests and CRP jumped up too high so increased to 10 again. Stayed a month and CRP dropped down. Started tapering by 1mg every 2 weeks and was feeling pretty good at 8mg. had a plan to keep dropping by 1mg, but Doc called with blood tests and CRP jumped again, so back to 10mg. Anybody have this problem? What did/are you doing? Anyone successfully get off pred after the tapering seesaw like this? How long did it take?

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1mg every two weeks under 10mg is a very fast reduction schedule which would likely invite a flare. I was reducing at about that rate (my idea, not the doctor's) when some pain started at 8mg. I was determined not to have a flare so told my doctor I wouldn't reduce further till pain was resolved.

So I moved up to 9.5mg for a week then dropped to 9mg for 4 weeks. No pain. I resumed the reduction more cautiously at .5mg every 3 weeks (1mg every 6wks - the recommended reduction schedule is 1mg every 4-8wks under 10mg). Have just reduced to 7.5mg and am doing fine so far. I alternate doses between the current dose and new dose each day in the first reduction week, to soften the reduction.

Going a little more slowly can avoid having to go back up in dose - which gives us a higher cumulative dose and takes longer to get off them. I'm no expert, just winging it like you and everyone else. Started on Prednisolone 5 months ago. I hope you find a good solution.

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@megz

1mg every two weeks under 10mg is a very fast reduction schedule which would likely invite a flare. I was reducing at about that rate (my idea, not the doctor's) when some pain started at 8mg. I was determined not to have a flare so told my doctor I wouldn't reduce further till pain was resolved.

So I moved up to 9.5mg for a week then dropped to 9mg for 4 weeks. No pain. I resumed the reduction more cautiously at .5mg every 3 weeks (1mg every 6wks - the recommended reduction schedule is 1mg every 4-8wks under 10mg). Have just reduced to 7.5mg and am doing fine so far. I alternate doses between the current dose and new dose each day in the first reduction week, to soften the reduction.

Going a little more slowly can avoid having to go back up in dose - which gives us a higher cumulative dose and takes longer to get off them. I'm no expert, just winging it like you and everyone else. Started on Prednisolone 5 months ago. I hope you find a good solution.

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Thank you for this insight. I'll talk to my doc about this at the next visit. I would rather go more slowly than have to regress again. a little progress is way better than starting over.

One more Q tho... When you say you stayed at the same level till you had no pain, do you really me zero pain or a smaller manageable level?

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