1. < Polymyalgia Rheumatica (PMR)

Prednisone and Pain

Posted by keelin @keelin, Oct 29, 2022

Am I the only one that found the prednisone did NOTHING for the pain? I am 6 months into this nightmare and am slowly taking myself OFF prednisone entirely. I had horrible side effects, and it seems that everyone e else I read about has total relief from pain while on the prednisone. ?
The only thing that helps slightly is an anti inflammatory. But of course I am warned about stroke, heart attack, and kidney problems taking it long term.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 21, 2022
In reply to @copeterson "It’s ok to whine… you have suffered for years. The only meds that truly improved my..." + (show)
@copeterson

It’s ok to whine… you have suffered for years. The only meds that truly improved my QOL were “burst prednisone” or Vicodin. So sorry you are in the pits.

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Welcome @copeterson, I 110% agree it's OK to whine when it comes to PMR or chronic pain. @jerseyjames I'm hoping your rheumy gives you a little slack. While they are the experts, we are the ones with the pain and listening is a two way street.

@copeterson, Is your PMR in remission? Have you made any lifestyle changes to help with PMR?

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1 reply
froehlich22 | @froehlich22 | Dec 21, 2022

I’ve never been pain free unless on a higher dose of prednisone (20 mg). I am currently on 9 mg and the pain is 6/10 in the mornings. Does anyone have a recommendation for stretching exercises and/or weight lifting? I am a female and used to do several reps of 8# weights and now can barely do 5. Ugh!

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1 reply
copeterson | @copeterson | Dec 21, 2022
In reply to @johnbishop "Welcome @copeterson, I 110% agree it's OK to whine when it comes to PMR or chronic..." + (show)
@johnbishop

Welcome @copeterson, I 110% agree it's OK to whine when it comes to PMR or chronic pain. @jerseyjames I'm hoping your rheumy gives you a little slack. While they are the experts, we are the ones with the pain and listening is a two way street.

@copeterson, Is your PMR in remission? Have you made any lifestyle changes to help with PMR?

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Thank you for asking. I’m not certain how to respond- dealt with this for seven years. I take 7.5 mg daily and, for the most part, can do whatever I wish physically. ( no heavy lifting) I do however wake up each night despite ambien meds and have periods of anxiety that my dr attributes to the prednisone. Without fail I wake up in the am feeling like I was run over by a tank.
Takes about an hour to come around. In the afternoons I feel neck and shoulder discomfort. This was the long answer to a short question!
I believe this is the best I can expect- a blessing considering my sister has ANCA vasculitis and is in chemo.

REPLY
cookiegirl1944 | @cookiegirl1944 | Dec 22, 2022
In reply to @jerseyjames "Hi Keelin. This is an interesting case as so many of us have considered Prednisone a..." + (show)
@jerseyjames

Hi Keelin. This is an interesting case as so many of us have considered Prednisone a miracle drug of sorts in helping relieve such intense PMR pain. Like so many, I had never even heard of PMR when it hit me like a ton of bricks during the pandemic. Pain relief came within 24 hours, and the two-year taper (titration) began then. I had no side effects to speak of - although we all have been told that it is optimal to get to very low dosages, or completely off of the stuff ASAP.

Dangerous to speculate, but I suspect that your Sed Rate (ESR) and CRP levels were way out of norm...otherwise rheumatologists would not have been so sure that you have PMR. Can you verify that - and perhaps share if those levels have normalized under your current treatment?

My rheumatologist has a ton of experience with PMR patients, and he seems to think that primary care folks have a tendency to taper too quickly from the high doses to the 1/to 2 mg level.

Personally, I was down to zero for a few months and have recently had to go back on a one-week taper which will hopefully snap me back to some level of normalcy. I'm not sure about that as it seems to fly in the face of the aforementioned long taper, but we shall see. During all of this time, with the exception of the very beginning, my Sed Rate's and CRP have been very low (normal). This is my struggle. There are times when the pain is so intense, but the labs always indicate zero inflammation in the body.

Hope you feel better and do continue sharing. This forum has great value.

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According to scientific studies the Sed rate and the C-reactive can be normal and a person can still have the disease ( PMR). This is also stated on the Mayo website under PMR.

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2 replies
scpartain | @scpartain | Dec 23, 2022
In reply to @cookiegirl1944 "According to scientific studies the Sed rate and the C-reactive can be normal and a person..." + (show)
@cookiegirl1944

According to scientific studies the Sed rate and the C-reactive can be normal and a person can still have the disease ( PMR). This is also stated on the Mayo website under PMR.

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Oddly enough, I've had high markers for inflammation during times when my PMR was in remission and I've had no pain.

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1 reply
cookiegirl1944 | @cookiegirl1944 | Dec 23, 2022
In reply to @scpartain "Oddly enough, I've had high markers for inflammation during times when my PMR was in remission..." + (show)
@scpartain

Oddly enough, I've had high markers for inflammation during times when my PMR was in remission and I've had no pain.

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That’s amazing. I wonder why that was?

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scpartain | @scpartain | Dec 23, 2022

I don’t have a clue. My doctor wondered about it too.

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sandiw77 | @sandiw77 | Dec 24, 2022
In reply to @froehlich22 "I’ve never been pain free unless on a higher dose of prednisone (20 mg). I am..." + (show)
@froehlich22

I’ve never been pain free unless on a higher dose of prednisone (20 mg). I am currently on 9 mg and the pain is 6/10 in the mornings. Does anyone have a recommendation for stretching exercises and/or weight lifting? I am a female and used to do several reps of 8# weights and now can barely do 5. Ugh!

Jump to this post

I’ve definitely had more pain as I have tapered my prednisone dose but my first month before tapering was bliss. I have to admit that the prednisone side effects have been miserable and my hip and shoulder pain are definitely present again. I am planning to make major dietary changes in the New Year that I hope will bear some fruit. Praying that 2023 is a year of remission for all of us! ❤️

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1 reply
suetex | @suetex | Dec 24, 2022

Season's greeting to everyone! And I hope everyone finds the answers they are seeking in the upcoming year. Best wishes!

REPLY
cookiegirl1944 | @cookiegirl1944 | Dec 24, 2022
In reply to @sandiw77 "I’ve definitely had more pain as I have tapered my prednisone dose but my first month..." + (show)
@sandiw77

I’ve definitely had more pain as I have tapered my prednisone dose but my first month before tapering was bliss. I have to admit that the prednisone side effects have been miserable and my hip and shoulder pain are definitely present again. I am planning to make major dietary changes in the New Year that I hope will bear some fruit. Praying that 2023 is a year of remission for all of us! ❤️

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Yes, hoping 2023 is a good year. When I got below 20 mg prednisone my stiffness in my legs/hips and pain started back up. I can’t keep on prednisone forever and I thought my doctor would start me on MTX but he didn’t. At that point I requested an evaluation with a rheumatologist ( which I should have done at the very beginning) in mid January so looking forward to new light being shed on the PMR and where to go from here as the prednisone no longer is managing my symptoms.
I went to a nurse practitioner in a holistic clinic in Burnsville MN and she prescribed LDN for me, Now because of the roads closed, thus no ambulances I didn’t want to start a new ( experimental) drug for pain/ inflammation until the roads opened. I did some research on LDN and I can tell you it sounds like a path for me as the prednisone is not working. Now once I get started in the LDN in a few days ( roads opened up now) I will report back on how/if it affected my level of pain. Now once I see the rheumatologist I may have to re-group. Hoping everyone has a wonderful Christmas.

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