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.

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johnhester | @johnhester | Jul 22 3:13pm
In reply to @michik "On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders,..." + (show)
@michik

On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders, I was diagnosed with PMR. I had not gone to see my GP as I had assumed that this was due to my arthritis in my neck and lower back. However as it was getting worse and worse I went to see my GP. He put me on 20 mg of prednisone for one week and then said to go to 15 mg for one week and then reduce to 12.5. After 2 days of 20 mg I could not believe the difference most of my symptoms had gone. Unfortunately when I went to 12.5 they came back and bumping back up to 15mg did not help so I have now been back on 20mg for 6 days. Unfortunately I still have some symptoms. From what I have read it seems that I originally went off the 20mg too soon. It looks like in many cases people start off with either 20 or 15 but for up to 4 weeks before they start reducing. I understand that everyone is different and we react differently. As I won't be talking to my GP for a while I would like some advice. Should I stay on the 20 mg or go back down to 15 ? I know it is not good to stay on the higher doses for too long ... but I don't know what too long means .. 2 , 3 weeks or is it months?
Also I have always been a very active person. Until my symptoms became too severe I was walking twice daily, hiking once a week, gardening etc.. When my symptoms got better after the original couple of days of 20mg prednisone I started walking again around 3 KM and doing lots of garden work, painting our fence etc. Am I doing too much and is that contributing to my symptoms returning??
I would so appreciate any advice you can give me regarding dosage and activity. Thank you!

Jump to this post

I believe I have had PMR for a least a year. Up until 6 months ago I thought the pain was caused from overexercising(My PP agreed). In hindsite, I feel sure I had PRM all along. When I went to ER with extreme pain in both shoulders and both hips the ER physician in a few minutes know it was PMR. He put me on 15mg Prednisone and recommended I see my PP. I had an apppointmet with my orthopedic surgeon and he scheduled me with a rumatologist which I really like. She kept me on 15 mg for 2 weeks and thn on 12.5mg for 2 weeks and the pains came back. She had me go back on 15 and the pains went away. I reduced the predensone in 3 weeks to 12.5 with no problem. I did my own tapering after that. I have been reducing prednisone 2.5 mg every 2 weeks with no problem. I will be down to 6mg this Thursday. At this point I will reduce 1mg every 2 weeks and see what happens. I personally believe for me that reducing dosage about 2-3mg every 2-3 weeks and see what happens with each taper. If pain returns go back to the prevous level and continue in this patern. When I get to 5mg then tapering must be slower, using trial and error. I think each person is diferent and that trial and error is appropriate. Good luck

REPLY
1 reply
michik | @michik | Jul 22 11:55pm
In reply to @johnhester "I believe I have had PMR for a least a year. Up until 6 months ago..." + (show)
@johnhester

I believe I have had PMR for a least a year. Up until 6 months ago I thought the pain was caused from overexercising(My PP agreed). In hindsite, I feel sure I had PRM all along. When I went to ER with extreme pain in both shoulders and both hips the ER physician in a few minutes know it was PMR. He put me on 15mg Prednisone and recommended I see my PP. I had an apppointmet with my orthopedic surgeon and he scheduled me with a rumatologist which I really like. She kept me on 15 mg for 2 weeks and thn on 12.5mg for 2 weeks and the pains came back. She had me go back on 15 and the pains went away. I reduced the predensone in 3 weeks to 12.5 with no problem. I did my own tapering after that. I have been reducing prednisone 2.5 mg every 2 weeks with no problem. I will be down to 6mg this Thursday. At this point I will reduce 1mg every 2 weeks and see what happens. I personally believe for me that reducing dosage about 2-3mg every 2-3 weeks and see what happens with each taper. If pain returns go back to the prevous level and continue in this patern. When I get to 5mg then tapering must be slower, using trial and error. I think each person is diferent and that trial and error is appropriate. Good luck

Jump to this post

Thank you @johnhester that is very helpful!

REPLY
1 reply
michik | @michik | Jul 23 12:03am
In reply to @michik "Thank you @johnhester that is very helpful!" + (show)
@michik

Thank you @johnhester that is very helpful!

Jump to this post

@johnhester I wish you the best of luck as you continue to reduce dosage. Hopefully you will remain pain free. During this time were you advised to take it easy physically? I am wondering if I am doing too much physically and it is counter productive. I guess there is a balance to keep moving but not overdo it?

REPLY
2 replies
leeta | @leetaanderson | Jul 23 8:02am
In reply to @michik "@johnhester I wish you the best of luck as you continue to reduce dosage. Hopefully you..." + (show)
@michik

@johnhester I wish you the best of luck as you continue to reduce dosage. Hopefully you will remain pain free. During this time were you advised to take it easy physically? I am wondering if I am doing too much physically and it is counter productive. I guess there is a balance to keep moving but not overdo it?

Jump to this post

I was diagnosed with PMR last January, and I’ve found it has reduced my stamina and capacity for hard exercise. I used to ride many miles on my bike, but now can only tolerate about half the distance and effort before I reach my limits. Walking more than 3+ miles makes me feel worse instead of better. I still have the stamina for daily exercise, but need to accept - for now - new limitations on my physical activities. Still, staying active makes all the difference in how I feel during the day, and how well I can sleep at night.

REPLY
1 reply
johnhester | @johnhester | Jul 23 8:32am
In reply to @michik "@johnhester I wish you the best of luck as you continue to reduce dosage. Hopefully you..." + (show)
@michik

@johnhester I wish you the best of luck as you continue to reduce dosage. Hopefully you will remain pain free. During this time were you advised to take it easy physically? I am wondering if I am doing too much physically and it is counter productive. I guess there is a balance to keep moving but not overdo it?

Jump to this post

I have continued to go to the gym and walk for a mile and use machines for about 1 hour. That works for me and I do not get too tired, however when I work in the yard, I get tired easily when bending over and lifting stuff. I enjoy yard work and this difference seems to be a puzzle for me. It seems that modest excercise and diet may help and should not hurt. I have greatly reduced carbs, red meat and sugar. Good luck on your journey.

REPLY
art43 | @art43 | Jul 23 8:38am
In reply to @michik "On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders,..." + (show)
@michik

On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders, I was diagnosed with PMR. I had not gone to see my GP as I had assumed that this was due to my arthritis in my neck and lower back. However as it was getting worse and worse I went to see my GP. He put me on 20 mg of prednisone for one week and then said to go to 15 mg for one week and then reduce to 12.5. After 2 days of 20 mg I could not believe the difference most of my symptoms had gone. Unfortunately when I went to 12.5 they came back and bumping back up to 15mg did not help so I have now been back on 20mg for 6 days. Unfortunately I still have some symptoms. From what I have read it seems that I originally went off the 20mg too soon. It looks like in many cases people start off with either 20 or 15 but for up to 4 weeks before they start reducing. I understand that everyone is different and we react differently. As I won't be talking to my GP for a while I would like some advice. Should I stay on the 20 mg or go back down to 15 ? I know it is not good to stay on the higher doses for too long ... but I don't know what too long means .. 2 , 3 weeks or is it months?
Also I have always been a very active person. Until my symptoms became too severe I was walking twice daily, hiking once a week, gardening etc.. When my symptoms got better after the original couple of days of 20mg prednisone I started walking again around 3 KM and doing lots of garden work, painting our fence etc. Am I doing too much and is that contributing to my symptoms returning??
I would so appreciate any advice you can give me regarding dosage and activity. Thank you!

Jump to this post

You probably should be staying on a dose that controls symptoms for a while longer, like several weeks. I had to stay on 30 for a month before starting to taper. Then down by 5 every two weeks to 10. At that point my SED/ESR tests were normal, and so the PMR was declared to be in remission. The taper then continued at 1 per month to 5, and now my taper is 0.5 per month.
I would strongly advise to stop changing dosages as quickly as you seem to be. Getting PMR into remission can take some time.
There are a lot of experiences and medical studies documented in this forum that should be helpful. Check them out.
Best of luck.

REPLY
gbspgh309 | @gbspgh309 | Jul 23 9:45am
In reply to @michik "On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders,..." + (show)
@michik

On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders, I was diagnosed with PMR. I had not gone to see my GP as I had assumed that this was due to my arthritis in my neck and lower back. However as it was getting worse and worse I went to see my GP. He put me on 20 mg of prednisone for one week and then said to go to 15 mg for one week and then reduce to 12.5. After 2 days of 20 mg I could not believe the difference most of my symptoms had gone. Unfortunately when I went to 12.5 they came back and bumping back up to 15mg did not help so I have now been back on 20mg for 6 days. Unfortunately I still have some symptoms. From what I have read it seems that I originally went off the 20mg too soon. It looks like in many cases people start off with either 20 or 15 but for up to 4 weeks before they start reducing. I understand that everyone is different and we react differently. As I won't be talking to my GP for a while I would like some advice. Should I stay on the 20 mg or go back down to 15 ? I know it is not good to stay on the higher doses for too long ... but I don't know what too long means .. 2 , 3 weeks or is it months?
Also I have always been a very active person. Until my symptoms became too severe I was walking twice daily, hiking once a week, gardening etc.. When my symptoms got better after the original couple of days of 20mg prednisone I started walking again around 3 KM and doing lots of garden work, painting our fence etc. Am I doing too much and is that contributing to my symptoms returning??
I would so appreciate any advice you can give me regarding dosage and activity. Thank you!

Jump to this post

I have started at about 20 mg and stayed for one month, reducing by 1 mg per month. My problems were going below 10, so I would go up by 1 for a month and then wait and see. I am 71, but I think you need to think more about not trying to do what you did before. I learned that the hard way.

REPLY
1 reply
DadCue | @dadcue | Jul 23 9:52am
In reply to @michik "On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders,..." + (show)
@michik

On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders, I was diagnosed with PMR. I had not gone to see my GP as I had assumed that this was due to my arthritis in my neck and lower back. However as it was getting worse and worse I went to see my GP. He put me on 20 mg of prednisone for one week and then said to go to 15 mg for one week and then reduce to 12.5. After 2 days of 20 mg I could not believe the difference most of my symptoms had gone. Unfortunately when I went to 12.5 they came back and bumping back up to 15mg did not help so I have now been back on 20mg for 6 days. Unfortunately I still have some symptoms. From what I have read it seems that I originally went off the 20mg too soon. It looks like in many cases people start off with either 20 or 15 but for up to 4 weeks before they start reducing. I understand that everyone is different and we react differently. As I won't be talking to my GP for a while I would like some advice. Should I stay on the 20 mg or go back down to 15 ? I know it is not good to stay on the higher doses for too long ... but I don't know what too long means .. 2 , 3 weeks or is it months?
Also I have always been a very active person. Until my symptoms became too severe I was walking twice daily, hiking once a week, gardening etc.. When my symptoms got better after the original couple of days of 20mg prednisone I started walking again around 3 KM and doing lots of garden work, painting our fence etc. Am I doing too much and is that contributing to my symptoms returning??
I would so appreciate any advice you can give me regarding dosage and activity. Thank you!

Jump to this post

As the following video states, there isn't a "gold standard" for tapering prednisone. I would agree with @art43 and perhaps stay on a steady dose for a longer time before starting to taper.


My rheumatologist told me when I was originally diagnosed with PMR that I should find a "stable dose that works." She didn't exactly care what the dose was as long as it worked to relieve my pain. It took some time for me to find the dose that consistently worked well so the pain was "tolerable" -- not pain free.

I thought my personal dose that worked well for me was 30 mg. After I had been at that dose for 2 months, my inflammation markers (ESR and CRP) were checked. My rheumatologist was a bit perplexed that my inflammation markers were still elevated on 30 mg of prednisone. She recommended that I increase my dose to 35 mg.

It is always better that a qualified doctor give you the guidance that you seek. As the video suggests there are other things to consider in terms of your personal risk of side effects from prednisone. Another thing that needs to be considered is your own personal comorbidity or the simultaneous presence of two or more diseases or medical conditions in a patient.

REPLY
michik | @michik | Jul 23 9:59am
In reply to @leetaanderson "I was diagnosed with PMR last January, and I’ve found it has reduced my stamina and..." + (show)
@leetaanderson

I was diagnosed with PMR last January, and I’ve found it has reduced my stamina and capacity for hard exercise. I used to ride many miles on my bike, but now can only tolerate about half the distance and effort before I reach my limits. Walking more than 3+ miles makes me feel worse instead of better. I still have the stamina for daily exercise, but need to accept - for now - new limitations on my physical activities. Still, staying active makes all the difference in how I feel during the day, and how well I can sleep at night.

Jump to this post

Thank you for this. I think I too have to accept new limitations. I am just starting to navigate through this new journey. I started with very little info and support. So glad that I found this forum and support. I now feel better informed and will continue to read through comments and links provided. My fear was of the side effects of prednisone and at 118lbs 20 mg seemed like a lot long term. I have been back on that dose for 6 days now and will continue for a few days more. Thanks again.

REPLY
1 reply
thereselefever | @thereselefever | Jul 23 11:09am
In reply to @michik "On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders,..." + (show)
@michik

On June 21st, 2024, after months of pain and stiffness in my hips, neck and shoulders, I was diagnosed with PMR. I had not gone to see my GP as I had assumed that this was due to my arthritis in my neck and lower back. However as it was getting worse and worse I went to see my GP. He put me on 20 mg of prednisone for one week and then said to go to 15 mg for one week and then reduce to 12.5. After 2 days of 20 mg I could not believe the difference most of my symptoms had gone. Unfortunately when I went to 12.5 they came back and bumping back up to 15mg did not help so I have now been back on 20mg for 6 days. Unfortunately I still have some symptoms. From what I have read it seems that I originally went off the 20mg too soon. It looks like in many cases people start off with either 20 or 15 but for up to 4 weeks before they start reducing. I understand that everyone is different and we react differently. As I won't be talking to my GP for a while I would like some advice. Should I stay on the 20 mg or go back down to 15 ? I know it is not good to stay on the higher doses for too long ... but I don't know what too long means .. 2 , 3 weeks or is it months?
Also I have always been a very active person. Until my symptoms became too severe I was walking twice daily, hiking once a week, gardening etc.. When my symptoms got better after the original couple of days of 20mg prednisone I started walking again around 3 KM and doing lots of garden work, painting our fence etc. Am I doing too much and is that contributing to my symptoms returning??
I would so appreciate any advice you can give me regarding dosage and activity. Thank you!

Jump to this post

One of the most difficult aspects of PMR is the inability for the body to recover after exercise. (At least in my circumstance) Gardening - pulling weeds - is the worst for me. Inevitably I end up suffering afterwards. I have started walking again, after a long break from any real steady exercise, and so far so good. Overdoing is no longer an option for me.

Good luck.

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