1. < Polymyalgia Rheumatica (PMR)

PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

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

linda7 | @linda7 | Jan 15, 2023
In reply to @bradninchgirl "Today was a set back but I was encouraged by all your experiences. Found out my..." + (show)
@bradninchgirl

Today was a set back but I was encouraged by all your experiences. Found out my Bone Scan wasn’t good. I now find I have to up my Prednisolone dose to 3 MG and take bone meds. I get the impression that neither the medical industry or my doctors know very much about this condition. I have found it hard to get consistent information on diet, are tomatoes good for your our bad, that depends on who is writing. And if they are then why not sweet pepper or potatoes? And Chocolate? Good or bad?

Today, I feel like I am going backwards when I thought I was making progress. Although it’s a little selfish, it is somehow good to read your experiences and not to feel so alone. I haven’t been using exercise to help but now I will. Thank you for all your positive posts. Has anyone any experience with bone density meds. I don’t want to start taking something that makes PMR worse.

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My rheumatologist put me on Fosamax for my bones as soon as I started prednisone. I have osteopenia which means my bone density is more than 10% below what a young person would have, not as bad as osteoporosis. I have gained around 4% of bone density in the 1.5 years I've been on it but would like to get off now that I am on a lower prednisone dose ( 6.5 mg). One of the listed side effects is muscle and joint pain. I don't know if it is adding to the significant pain I have but I would like to find out and will ask my rheumy about it next visit. I've read a paper stating that drugs like Fosamax are recommended for people with osteopenia taking 7.5 mg or more of prednisone. Below 7.5 there is no opinion one way or the other.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 16, 2023
In reply to @linda7 "My rheumatologist put me on Fosamax for my bones as soon as I started prednisone. I..." + (show)
@linda7

My rheumatologist put me on Fosamax for my bones as soon as I started prednisone. I have osteopenia which means my bone density is more than 10% below what a young person would have, not as bad as osteoporosis. I have gained around 4% of bone density in the 1.5 years I've been on it but would like to get off now that I am on a lower prednisone dose ( 6.5 mg). One of the listed side effects is muscle and joint pain. I don't know if it is adding to the significant pain I have but I would like to find out and will ask my rheumy about it next visit. I've read a paper stating that drugs like Fosamax are recommended for people with osteopenia taking 7.5 mg or more of prednisone. Below 7.5 there is no opinion one way or the other.

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Hi @linda7, I've not taken Fosamax but have read that it can cause pain. Here's some information on the topic.

"Can Fosamax cause joint and muscle pain?
The FDA found that Fosamax patients can also develop intense bone, muscle and joint pains within days, months or years after starting the drug. For some people, this pain stops almost immediately after discontinuing the medication."
-- Fosamax Side Effects | Problems With Esophagus & Femur Pain
https://www.drugwatch.com/fosamax/side-effects/

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tita65 | @tita65 | Jan 16, 2023
In reply to @johnbishop "@maryft, It can definitely be confusing and you have asked some really good questions. I think..." + (show)
@johnbishop

@maryft, It can definitely be confusing and you have asked some really good questions. I think you will probably get the best answer from your rheumatologist. I had some of the same questions my first time around with PMR and my rheumatologist gave me some valuable insight when I was 3 years into PMR and having trouble tapering off of 1 mg prednisone. He told me about a younger professional athlete he had for a patient that spent 1 year trying to taper off of prednisone and suggested I try what he did - split my 1 mg tablet in half to taper down to 1/2 g. I did that and went back and forth between 1 and 1/2 mg doses until I was finally able to taper off with only a minor ache in the mornings. Sometimes our bodies don't give us the choice of being on prednisone long term. You are right about the varied dosages and time frames. I think our individual pain thresholds and tolerances play a part in how soon we can get off of prednisone because we are all affected a little different. I'm hoping other folks with PMR experience can provide their thoughts and suggestions also.

Are you able to discuss your concerns with your doctor or rheumatologist?

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My doctor and my rheumatologist unfortunately disagree with both the diagnosis and the treatment. I am now on Advil Joint and Muscle 400g (my own treatment decision/choice!) and I only have to take one every 48 to 72 hours to manage the pain and stiffness. However, I now worry about the impact of the Advil over the long term. Thoughts?

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suetex | @suetex | Jan 16, 2023
In reply to @johnbishop "Have you seen this discussion? -- Positive ANA: What might be the cause? https://connect.mayoclinic.org/discussion/positive-ana/" + (show)
@johnbishop

Have you seen this discussion?
-- Positive ANA: What might be the cause?
https://connect.mayoclinic.org/discussion/positive-ana/

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I have read throught some of their discussions and I have yet to see them get past the "positive ANA" phase. Can't someone help them understand that a positive ana just leads to more specific test to find out what their body is doing on a more specific level? This is just a screening test to see if they need more testing. And the reference to mercury, I'm not even going to go there....

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milld835 | @milld835 | Jan 17, 2023
In reply to @abbeyc "Thanks. Sounds like this is new for you too. Isn't this just unbelievable? I never knew..." + (show)
@abbeyc

Thanks. Sounds like this is new for you too. Isn't this just unbelievable? I never knew this disease existed before. Anyway, yes you need to see Rheumatologist to get the proper blood tests and be put on the Prednisone treatment plan where they monitor your blood test levels and determine the dosage requirement month by month, is my understanding. Good luck. Waiting til May is long.

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My Rheumatologist sucks and I've only been able to see her once since May 2022 and one 10 min phone appt. I get more helpful information on this Site than any doctor has provided thus far. I do get monthly bloodwork, but never find out the result of it - good or bad. I have to make an appointment with my GP in order to discuss any outcomes. At 14.0 mg. at this time. Would love to taper down a bit, but this is not the time for that. Too many flu bugs floating around. Negative Nancy today. Sorry, have a stomach bug. Nothing seems to be the "24 hour" variety anymore. Wish I could be more uplifting. Cheers to you!

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1 reply
mary4 | @mary4 | Jan 18, 2023

Abbeyc, no apologies necessary for sitting with your frustration and disappointment. Not here anyway, I expect. We have all been at that place. So many lows, and very highs on this journey. I too get my encouragement and hope here. I wonder if asking your rheumatologist at a minimum for your chemistry results as they come in would help you feel more informed along the way ? Seems a small ask. I can log onto my lab site and get my own. Good or bad I feel better having that ability. I hope you find a boost. Take care.

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suetex | @suetex | Jan 18, 2023
In reply to @milld835 "My Rheumatologist sucks and I've only been able to see her once since May 2022 and..." + (show)
@milld835

My Rheumatologist sucks and I've only been able to see her once since May 2022 and one 10 min phone appt. I get more helpful information on this Site than any doctor has provided thus far. I do get monthly bloodwork, but never find out the result of it - good or bad. I have to make an appointment with my GP in order to discuss any outcomes. At 14.0 mg. at this time. Would love to taper down a bit, but this is not the time for that. Too many flu bugs floating around. Negative Nancy today. Sorry, have a stomach bug. Nothing seems to be the "24 hour" variety anymore. Wish I could be more uplifting. Cheers to you!

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May I suggest a probiotic? There are some good ones out there. Try to find one with the most different species, not the most colony forming units. Also, colostrum that you find at the health food store (powered or capsules), helps protect the stomach lining from bad bugs. Things I've learned as a Crohn's patient. Both do not require a script.

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1 reply
milld835 | @milld835 | Jan 18, 2023
In reply to @suetex "May I suggest a probiotic? There are some good ones out there. Try to find one..." + (show)
@suetex

May I suggest a probiotic? There are some good ones out there. Try to find one with the most different species, not the most colony forming units. Also, colostrum that you find at the health food store (powered or capsules), helps protect the stomach lining from bad bugs. Things I've learned as a Crohn's patient. Both do not require a script.

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Thanks for this info. At this point, anything is worth a try. 🙂

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pjnewm | @pjnewm | Feb 1, 2023

I was doing pretty well on 5 mg of prednisone a day tapering it down from 16 mg at one time approximately a year and a half ago. I believe I’m having a flare and I suspect I need to increase my prednisone and I am wondering about how to go about it. Should I go up in 5 mg increments or less and if so, what is a common dose that takes care of the flare?

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2 replies
avidhiker | @avidhiker | Feb 2, 2023
In reply to @pjnewm "I was doing pretty well on 5 mg of prednisone a day tapering it down from..." + (show)
@pjnewm

I was doing pretty well on 5 mg of prednisone a day tapering it down from 16 mg at one time approximately a year and a half ago. I believe I’m having a flare and I suspect I need to increase my prednisone and I am wondering about how to go about it. Should I go up in 5 mg increments or less and if so, what is a common dose that takes care of the flare?

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That is so frustrating, getting down to 5 mg and then having a flare-up. I also had been tapering for months and was down to 2 mg looking towards the end when I had a flare-up. I increased from 2 to 3 and when that didn't work after several days I went up to 4 and then to 5 when that failed to relieve discomfort. Since then I have been tapering by 1/2 mg every three weeks, and that works for me. Also, as much as possible I have removed processed foods and refined sugar from my diet. Good luck.

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