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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linda7 | @linda7 | Mar 2, 2022
In reply to @sandy1988 "This blog is very helpful. What I am struggling with right now is the tapering with..." + (show)
@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

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I'm going through a similar problem with the taper. I went from 20 mg down to 10 with no pain at all. At 8 mg I had some pain but wasn't sure if it was PMR or pre-existing back and neck pain. I continued the taper on down to 6 mg at 1 mg drop every 3 weeks. Then the pain got worse and radiated outward into my shoulders. I called my doctor and he told me to go back up to 9 where I had been pain-free. That only partially helped so he told me to bump up to 10. Pain relief is fairly good there. I've learned to take my symptoms seriously and that trying to endure pain does not help in the process of getting off prednisone. I've done research online about the taper. American College of Rheumatology (2015) recommends 1 mg drop per month of prednisone below 10 mg. My rheumatologist says 1 mg every 3 weeks from 10 mg to 5 mg and then a slower taper, but he didn't give details about that. At this point 5 mg seems a long way off!

REPLY
1 reply
quilterdar | @quilterdar | Mar 2, 2022
In reply to @linda7 "I'm going through a similar problem with the taper. I went from 20 mg down to..." + (show)
@linda7

I'm going through a similar problem with the taper. I went from 20 mg down to 10 with no pain at all. At 8 mg I had some pain but wasn't sure if it was PMR or pre-existing back and neck pain. I continued the taper on down to 6 mg at 1 mg drop every 3 weeks. Then the pain got worse and radiated outward into my shoulders. I called my doctor and he told me to go back up to 9 where I had been pain-free. That only partially helped so he told me to bump up to 10. Pain relief is fairly good there. I've learned to take my symptoms seriously and that trying to endure pain does not help in the process of getting off prednisone. I've done research online about the taper. American College of Rheumatology (2015) recommends 1 mg drop per month of prednisone below 10 mg. My rheumatologist says 1 mg every 3 weeks from 10 mg to 5 mg and then a slower taper, but he didn't give details about that. At this point 5 mg seems a long way off!

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I have to cut the tabs in half and taper and the closer I get to 3mg I quarter decreasing by 3-4 days and I do much better. Had a set back and now have to start from 5 again. But should go quickly back to 3 then the slow process.

REPLY
quilterdar | @quilterdar | Mar 2, 2022
In reply to @sandy1988 "This blog is very helpful. What I am struggling with right now is the tapering with..." + (show)
@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

Jump to this post

Forgot to mention in my last note about the half and quartered tabs, that I could not do without my TENS unit for back that bothers me the most with pain and stiffness.

REPLY
sashakay | @sashakay | Mar 2, 2022
In reply to @sandy1988 "This blog is very helpful. What I am struggling with right now is the tapering with..." + (show)
@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

Jump to this post

Tapering off can be challenging. I am fortunate I have a Doctor who works with me, his philosophy is I know my body better than he does. So we dovetail his medical knowledge and my sense of what my body needs to do next. I hope that makes sense because I know it seems a bit loopy. So what we have come up with, which is working at the moment is, if the pain is not in the areas that I normally experience PMR then stay with the dose I am on and support with Tylenol. If that works and I am then pain-free continue that for a while. Then I’ll do the alternating days like 4 mg 3 mg 4 mg for one month or less. I realize that this protocol might be not acceptable by other medics but am fortunate to have a doctor that supports this philosophy.

REPLY
1 reply
juneh | @juneh | Mar 3, 2022
In reply to @sashakay "Tapering off can be challenging. I am fortunate I have a Doctor who works with me,..." + (show)
@sashakay

Tapering off can be challenging. I am fortunate I have a Doctor who works with me, his philosophy is I know my body better than he does. So we dovetail his medical knowledge and my sense of what my body needs to do next. I hope that makes sense because I know it seems a bit loopy. So what we have come up with, which is working at the moment is, if the pain is not in the areas that I normally experience PMR then stay with the dose I am on and support with Tylenol. If that works and I am then pain-free continue that for a while. Then I’ll do the alternating days like 4 mg 3 mg 4 mg for one month or less. I realize that this protocol might be not acceptable by other medics but am fortunate to have a doctor that supports this philosophy.

Jump to this post

I’m really having problems ramping down. My labs are good but a lilt pain in 1-2 places persists. I’ve been hovering around 16-17mg for a month. Saw my doc yesterday who stressed ramping down. I was wondering about taking Tylenol for the pain portion of the process as long as labs are good. I’ve started trying the every other day dose too. Thank you…so helpful to be on this blog.

REPLY
1 reply
gailpmr | @gailpmr | Jul 23, 2022
In reply to @barbararene "I am taking the 4 mg of predisone and yes I am having pain in my..." + (show)
@barbararene

I am taking the 4 mg of predisone and yes I am having pain in my arms and shoulders and especially my feet now. This is the strangest illness ever!!! I'm like you as far as I have always been anti medication and wanted to do it all natural. Unfortunately the predisone is the only thing that works. I am going to see a physical therapist on Tuesday who I am told specializes in PMR. I will let you know what I think about it. I can't imagine he would have anything to offer me, but will see. Getting in the Hot Tub gives me some relief, but I can't imagine all that heat would be good for inflammation. Your thoughts? And remission seems like will it ever happen.

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I have PMR and have been on prednisone for approx 2 year, started on 15mg…i have been reducing 1 mg a month, i am now down to 1 mg….my feet especially my heels started aching when i went down to 2mg…thought it was my shoes causing it, so i went down to 1mg..feet are still soar but once i walk around the pain in my feet eases, i have started to feel a bit of aching in my lower joints hips and knees…i am going to keep going and maybe after a month of 1mg will go to a half…my fingers are crossed, hoping to get off prednisone…

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 23, 2022
In reply to @gailpmr "I have PMR and have been on prednisone for approx 2 year, started on 15mg…i have..." + (show)
@gailpmr

I have PMR and have been on prednisone for approx 2 year, started on 15mg…i have been reducing 1 mg a month, i am now down to 1 mg….my feet especially my heels started aching when i went down to 2mg…thought it was my shoes causing it, so i went down to 1mg..feet are still soar but once i walk around the pain in my feet eases, i have started to feel a bit of aching in my lower joints hips and knees…i am going to keep going and maybe after a month of 1mg will go to a half…my fingers are crossed, hoping to get off prednisone…

Jump to this post

Welcome @gailpmr, It sounds like you are doing really well with the tapering. My first time around I had a lot of problems getting from 1 mg to being totally off of prednisone. It took me 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg on a weekly taper until I was finally able to be off with little to no aches and pains. It went much better my second time around 6 years later and only took 1-1/2 years to taper off. I made a few lifestyle changes in my diet and exercise which I think played a big part.

Do you keep a daily pain log of how you feel and what dosage you are on to help you?

REPLY
1 reply
gailpmr | @gailpmr | Jul 23, 2022
In reply to @johnbishop "Welcome @gailpmr, It sounds like you are doing really well with the tapering. My first time..." + (show)
@johnbishop

Welcome @gailpmr, It sounds like you are doing really well with the tapering. My first time around I had a lot of problems getting from 1 mg to being totally off of prednisone. It took me 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg on a weekly taper until I was finally able to be off with little to no aches and pains. It went much better my second time around 6 years later and only took 1-1/2 years to taper off. I made a few lifestyle changes in my diet and exercise which I think played a big part.

Do you keep a daily pain log of how you feel and what dosage you are on to help you?

Jump to this post

No, i didn’t keep a log, i do remember, when i got into lower doses 10mg and lower i would feel off and a bit achy, this would only last for a couple of days, then once i got down to 2mg, my feet especially my heels would throb, i thought maybe it was plantar fasciitis…i just wore shoes that supported my feet better…so a month later i went down to 1mg…still have sore feet mostly heel area, my knee and hip joints are becoming acky, i can tolerate this discomfort…i will reduce again on July 23rd to a 1/2 mg and see how it goes…

REPLY
1 reply
tillysam | @tillysam | Jul 24, 2022
In reply to @juneh "I’m really having problems ramping down. My labs are good but a lilt pain in 1-2..." + (show)
@juneh

I’m really having problems ramping down. My labs are good but a lilt pain in 1-2 places persists. I’ve been hovering around 16-17mg for a month. Saw my doc yesterday who stressed ramping down. I was wondering about taking Tylenol for the pain portion of the process as long as labs are good. I’ve started trying the every other day dose too. Thank you…so helpful to be on this blog.

Jump to this post

I have to take Tylenol for pain. It does help. Try the 8 hour Tylenol.

REPLY
aspine | @aspine | Jul 26, 2022
In reply to @gailpmr "No, i didn’t keep a log, i do remember, when i got into lower doses 10mg..." + (show)
@gailpmr

No, i didn’t keep a log, i do remember, when i got into lower doses 10mg and lower i would feel off and a bit achy, this would only last for a couple of days, then once i got down to 2mg, my feet especially my heels would throb, i thought maybe it was plantar fasciitis…i just wore shoes that supported my feet better…so a month later i went down to 1mg…still have sore feet mostly heel area, my knee and hip joints are becoming acky, i can tolerate this discomfort…i will reduce again on July 23rd to a 1/2 mg and see how it goes…

Jump to this post

It usually isn't recommended to taper down if you are currently in pain. The pain usually means you already aren't taking enough prednisone to control the inflammation in your body. If you go down again, it might only get worse - even invite a flare. That will set you back a lot! You should probably discuss this with your doctor.

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