1. < Polymyalgia Rheumatica (PMR)

PMR Taper and pain

Posted by riji @riji, Jan 5 10:29am

After 2 years with PMR, about to go to 2 mg of prednisone and feel like I did back 2 years ago...is the PMR still in me or is it the taper or both?
Thanks for any info.

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lowell77 | @lowell77 | Jan 6 1:51pm

Hi Gang! Tapering from 25 mgs of predisone about five months ago down to 10 now for my PMR. But lately feeling some slight return of symptoms -- some morning stiffness and slight aches in wrists and shoulders. Overall discomfort is tolerable at this point. Not wincing in pain too much. So I am inclined to tough it out and keep tapering with a goal to get off it in ten months.
My question: How bad must it get before you up your predisone dose a notch?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 6 2:00pm
In reply to @lowell77 "Hi Gang! Tapering from 25 mgs of predisone about five months ago down to 10 now..." + (show)
@lowell77

Hi Gang! Tapering from 25 mgs of predisone about five months ago down to 10 now for my PMR. But lately feeling some slight return of symptoms -- some morning stiffness and slight aches in wrists and shoulders. Overall discomfort is tolerable at this point. Not wincing in pain too much. So I am inclined to tough it out and keep tapering with a goal to get off it in ten months.
My question: How bad must it get before you up your predisone dose a notch?

Jump to this post

Hi @lowell77, That's a great question and I think it really depends on the individual and what is considered acceptable pain/stiffness. You might want to check out another discussion here:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I always kept a daily log with my level of pain when I woke up in the morning and my dosage scheduled for the day. If my pain was greater than a 2 on my 0 to 10 pain scale, I didn't taper to the next lower dose and if it was really bad I increase my dose by half of the previous taper down so I wouldn't be going back to the previous dose. I would stay at the dose for a week or so before trying to taper again.

Do you keep a daily log of symptoms and dose?

REPLY
1 reply
marmak | @marmak | Jan 7 5:45am

I recently had a Dexa scan which did show a worsening of my osteopenia. I've weaned from 60 to 15mg prednisone over the coarse of last year. My partner, who doesn't have PMR but has early osteoporosis, was started on Fosamax. She had to stop after 4 doses because of side effects. What is concerning is she went to the dentist and was found to have an abscessed tooth. He told her he couldn't do bone grafts for implants because of her Fosamax use, telling her it prevented calcium reabsorbtion and bone growth after a few doses. This was new to me so haven't had time to look into this. Has anyone else seen information on this?

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barracudacool | @barracudacool | Jan 7 6:25am

I have just started Kevzara along with the methotrexate. It is a biologic which targets Il- 6. I had my first shot almost two weeks ago. Blood work drawn this past week revealed some fairly startling news. My inflammation numbers, both sed and reactive protein are now normal after a year of pmr. Even on 30mg then 20 to 10mg of prednisone over the past year the inflammation numbers had remained high. So I am so hopeful now that something will help me with the below 10mg taper.

REPLY
1 reply
pkalkstein | @pkalkstein | Jan 7 7:11am
In reply to @riji "I have to get off of the prednisone due to the worsening of my osteoporosis so..." + (show)
@riji

I have to get off of the prednisone due to the worsening of my osteoporosis so in my mind, no going back to any previous dose......I just live with the pain. My rheumy suggested hydroxychloquine to help with inflammation but I got a scary rash head to toe. I'm surviving on tylenol a couple times per day. The PMR arrived shortly after I had a senior flu shot and two weeks later the covid booster....but doctors won't connect it since they say no scientific proof. I was in great shape before this and after two years, at 75, I'm not sure how much longer I have to deal with this, however there are so many worse things. My CRP is at 24 so the PMR appears still active. I've recently read that low dose naltrexone can help but again, numerous side effects. Also I'm very hesitant to take osteoporosis drugs due to ugly side effects. Has anyone ahd a good experience with these drugs? Thanks for your input.

Jump to this post

Low dose naltrexone has produced no side effects at all for me. Although it has been great for neuropathy, I cannot detect any help with PMR. I need just as much prednisone.

REPLY
54pontiac | @54pontiac | Jan 7 9:31am

I have come to the conclusion that what matters is the pain/side effects, not what a doctor thinks is best or our age or what some numbers on a page seem to indicate. Living with pain is not living. If we have a way to control it that is not worse than the pain, we should use it. The only absolute is that everybody is different. My two cents.

REPLY
1 reply
nyxygirl | @nyxygirl | Jan 7 10:59am
In reply to @riji "I have to get off of the prednisone due to the worsening of my osteoporosis so..." + (show)
@riji

I have to get off of the prednisone due to the worsening of my osteoporosis so in my mind, no going back to any previous dose......I just live with the pain. My rheumy suggested hydroxychloquine to help with inflammation but I got a scary rash head to toe. I'm surviving on tylenol a couple times per day. The PMR arrived shortly after I had a senior flu shot and two weeks later the covid booster....but doctors won't connect it since they say no scientific proof. I was in great shape before this and after two years, at 75, I'm not sure how much longer I have to deal with this, however there are so many worse things. My CRP is at 24 so the PMR appears still active. I've recently read that low dose naltrexone can help but again, numerous side effects. Also I'm very hesitant to take osteoporosis drugs due to ugly side effects. Has anyone ahd a good experience with these drugs? Thanks for your input.

Jump to this post

@riji where do you live ? there is a Novartis trial recruiting people that are having a PMR flare as i understand the criteria - there is a conversation i started called Clinical Trials

And /or ask you doctors to consider Kevzara to help your tapering

you wrote : "I have pain in shoulders and biceps and upper thighs and knees which makes it hard to do some things but I force myself to walk and exercise when I can."
Interesting that you are having the classic pain symptoms with elevated CRP - i have been tracking symmetrical pain in shoulders biceps and joint pain in both thumbs during the past month or so BUT without elevated CRP /ESR. so since i have a history of cervical spine radiculopathy - i am guessing this is my issue.

REPLY
2 replies
lowell77 | @lowell77 | Jan 7 12:09pm
In reply to @johnbishop "Hi @lowell77, That's a great question and I think it really depends on the individual and..." + (show)
@johnbishop

Hi @lowell77, That's a great question and I think it really depends on the individual and what is considered acceptable pain/stiffness. You might want to check out another discussion here:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I always kept a daily log with my level of pain when I woke up in the morning and my dosage scheduled for the day. If my pain was greater than a 2 on my 0 to 10 pain scale, I didn't taper to the next lower dose and if it was really bad I increase my dose by half of the previous taper down so I wouldn't be going back to the previous dose. I would stay at the dose for a week or so before trying to taper again.

Do you keep a daily log of symptoms and dose?

Jump to this post

I keep a dosage log....I like the idea of adding a pain number/symptoms log to it and will now do that. Thanks for the suggestion.

REPLY
riji | @riji | Jan 7 12:46pm
In reply to @nyxygirl "@riji where do you live ? there is a Novartis trial recruiting people that are having..." + (show)
@nyxygirl

@riji where do you live ? there is a Novartis trial recruiting people that are having a PMR flare as i understand the criteria - there is a conversation i started called Clinical Trials

And /or ask you doctors to consider Kevzara to help your tapering

you wrote : "I have pain in shoulders and biceps and upper thighs and knees which makes it hard to do some things but I force myself to walk and exercise when I can."
Interesting that you are having the classic pain symptoms with elevated CRP - i have been tracking symmetrical pain in shoulders biceps and joint pain in both thumbs during the past month or so BUT without elevated CRP /ESR. so since i have a history of cervical spine radiculopathy - i am guessing this is my issue.

Jump to this post

I'm in southern new hampshire - I'll ask my rhemy about Kevzara.....what are side effects?
Thanks for info!

REPLY
riji | @riji | Jan 7 12:53pm
In reply to @nyxygirl "@riji where do you live ? there is a Novartis trial recruiting people that are having..." + (show)
@nyxygirl

@riji where do you live ? there is a Novartis trial recruiting people that are having a PMR flare as i understand the criteria - there is a conversation i started called Clinical Trials

And /or ask you doctors to consider Kevzara to help your tapering

you wrote : "I have pain in shoulders and biceps and upper thighs and knees which makes it hard to do some things but I force myself to walk and exercise when I can."
Interesting that you are having the classic pain symptoms with elevated CRP - i have been tracking symmetrical pain in shoulders biceps and joint pain in both thumbs during the past month or so BUT without elevated CRP /ESR. so since i have a history of cervical spine radiculopathy - i am guessing this is my issue.

Jump to this post

I looked it up and kevzara has some pretty nasty side effects---don't like messing with my immune system. I'll ask doctor anyway.

REPLY
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