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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lindaadel | @lindaadel | Oct 27, 2023
In reply to @kaydall "I've had PMR for over a year and tapering is frustrating. Started at 20mg and easily..." + (show)
@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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The bottom line is each of us is different and her rheumatologist are different and PMR pain is absolutely no fun!!!! I started prednisone at 10 mg in April now I am down to 1 mg for three weeks and then my rheumatologist said she does not believe in medication unless the pain is intolerable!!! The mornings are the worst I can hardly move every joint hurts as the day goes on and improves a little but not good. I am going to take one day at a time and see how things work out with the pain.

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megz | @megz | Oct 27, 2023
In reply to @kaydall "Thank you for this insight. I'll talk to my doc about this at the next visit...." + (show)
@kaydall

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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When I got down to 8mg some tolerable pain in the previously painfree joints came back. On John's pain scale, I had moved from 1/10 pain with zero pain in shoulders, elbows, wrists, hands and back of the knees (the only pain which never went away was base of thumbs), to 3/10 pain returning in some joints. I sat on the 8mg for 4wks hoping it would resolve by itself but it got no better. The new pain was tolerable but to me was a warning that a further reduction could only make things worse.

Whenever I reduce, some slight aches usually come back in the first week but are gone by week 2-3. Faster reductions wouldn't give enough time to see if the body is able to adjust to the new dose.

Edit: To directly answer your question about pain level after the slight dose increase, yes, I mean zero pain in all joints, apart from occasional aching twinges in the base of the thumbs and the odd finger. I have no problem with that at all.

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alissahe | @alissahe | Oct 28, 2023

I’ve had PMR for a year. I’m on my 2nd attempt at tapering and stalled out at 7.5 mg again this time. Gave it two weeks but had such limited functioning that I’ve now gone back up to 8 mg. I’ll give myself the respite of less pain for a week or two and then try alternating days of 8 and 7.5.

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1 reply
janielou56 | @janielou56 | Oct 29, 2023
In reply to @alissahe "I’ve had PMR for a year. I’m on my 2nd attempt at tapering and stalled out..." + (show)
@alissahe

I’ve had PMR for a year. I’m on my 2nd attempt at tapering and stalled out at 7.5 mg again this time. Gave it two weeks but had such limited functioning that I’ve now gone back up to 8 mg. I’ll give myself the respite of less pain for a week or two and then try alternating days of 8 and 7.5.

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Dear @alissahe
Have you and your Dr. thought about combining your prednisone with Low dose Naltrexone (LDN)4.5
I believe that it's been helpful for me.
I was diagnosed with PMR eight months ago.
Was put on 20 mg of prednisone by my GP. The prednisone started taking my pain away within days to a tolerable level But I struggled with lots of side effects.
Two weeks after that my functional doctor included LDN.
After reading some articles about
Splitting prednisone I got permission to take most of my prednisone in the morning with my breakfast. Then 1 mg of prednisone at night before I went to sleep so that I could wake up without much pain and get a good sleep.
Today I'm down to 6mg of pred 5+ LDN in the am and 1 at night bf bed.
My functional doctor also said that if I had pain anywhere I could take Traumeel ( an analgesic) as needed. So far the journey has been tolerable and my moon face has slowly disappeared.
Good luck to you in your PMR journey.

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alissahe | @alissahe | Oct 29, 2023

What are the possible side effects of LDN?
I’m reluctant to take another med but I have an appointment w/ my rheumatologist in about 3 weeks and will try to learn a bit about this option before they

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1 reply
janielou56 | @janielou56 | Oct 29, 2023
In reply to @alissahe "What are the possible side effects of LDN? I’m reluctant to take another med but I..." + (show)
@alissahe

What are the possible side effects of LDN?
I’m reluctant to take another med but I have an appointment w/ my rheumatologist in about 3 weeks and will try to learn a bit about this option before they

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Look it up but I don't think that there are any.
In higher doses Naltrexone is used for a lot of other things.

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sunshine4u | @sunshine4u | Nov 6, 2023
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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I have been splitting my 5mg in half as well. Seems to work well. Going from 20 - 15 was causing too much pain but when I went to 17.5, it was good and kept pain tolerable. After a month, I went to 15, then another month later down to 12.5. I will go to 10 after Thanksgiving so we shall see how that goes. She gave me 1 mg tablets so if dropping 2.5 is too much, I can drop just 1.5.

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