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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naezzo | @naezzo | Aug 22, 2022
In reply to @tsc "Hi @naezzo, a lower dosage of prednisone (about 20 mg) is supposed to miraculously make symptoms..." + (show)
@tsc

Hi @naezzo, a lower dosage of prednisone (about 20 mg) is supposed to miraculously make symptoms of PMR disappear, but it's companion disorder, Giant Cell Arteritis (GCA) requires a higher doaage of prednisone. I'm small, 5 ft., about 100 lbs and was put on 40 mg. Did your doctor ask you about scalp tenderness, inability to chew, jaw pain, low energy, a dry cough, vision problems? My PMR kind of left me, but I advanced to symptoms of GCA which can cause blindness or stroke if left untreated.

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Thanks for commenting.
My doctor did check all of the other, no scapl probs, rash, headaches, eye issues of jaw problems.
Strictly PMR.
30 MG works, but still have daily morning pain.

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kmeikle1 | @kmeikle1 | Aug 22, 2022
In reply to @flymetothemoon "My doctor has always emphasized that she is treating the condition and not the symptoms. Of..." + (show)
@flymetothemoon

My doctor has always emphasized that she is treating the condition and not the symptoms. Of course, when the pain got really bad at one point I increased the Prednisone. However, going to reduce my 1 mg to 1/2 today. Moderate pain in shoulders and upper arms and hands. I have bursitis in my knees, along with old stress fracture that won't heal. Nobody knows the full nature of this beast and PMR can certainly affect different people in different ways. The only reason I will go back on this Prednisone when I'm done, is if pain becomes unmanageable or if Sed rate and CRP go up. More concerned about my type 2 diabetes, and osteoporosis. Fun times.

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@flymetothemoon I'm not sure what your doctor means since treating PMR is treating the symptoms. That's why schedules and formulas don't work. What may work for one doesn't work for another. So we pay attention to our symptoms and treat accordingly.
Hope your taper works well. 1/2 mg. seems like a dream to me.

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1 reply
loyal | @loyal | Aug 23, 2022
In reply to @suetex "Went to another neurologist today about my balance problems. He thinks it is an acumulation of..." + (show)
@suetex

Went to another neurologist today about my balance problems. He thinks it is an acumulation of mechanical problems that started when my PMR went undignosed and untreated for 4 years. Several factors since then have all added up. So this a warning, if you will. to get diagnosed and treated as early as you can. More PT in my future. If it will help, I'm all for it.

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I feel for you. Untreated PMR for 4 years would be a nightmare. It took 6 months for my PMR to be diagnosed and treated. That was a very hard time. Glad you have the diagnosis and treatment now.

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flymetothemoon | @flymetothemoon | Aug 23, 2022
In reply to @kmeikle1 "@flymetothemoon I'm not sure what your doctor means since treating PMR is treating the symptoms. That's..." + (show)
@kmeikle1

@flymetothemoon I'm not sure what your doctor means since treating PMR is treating the symptoms. That's why schedules and formulas don't work. What may work for one doesn't work for another. So we pay attention to our symptoms and treat accordingly.
Hope your taper works well. 1/2 mg. seems like a dream to me.

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What she means is as long as blood tests are normal her goal is to get me off the steroids. Of course regardless of blood tests if pain becomes unbearable I will have no choice, however for now it’s not. The Celebrex is helping. The steroids cause other issues for me due to type 2 diabetes and osteoporosis.

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1 reply
kmeikle1 | @kmeikle1 | Aug 23, 2022
In reply to @flymetothemoon "What she means is as long as blood tests are normal her goal is to get..." + (show)
@flymetothemoon

What she means is as long as blood tests are normal her goal is to get me off the steroids. Of course regardless of blood tests if pain becomes unbearable I will have no choice, however for now it’s not. The Celebrex is helping. The steroids cause other issues for me due to type 2 diabetes and osteoporosis.

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@flymetothemoon It's hard to argue with success since you're at 1/2 mg., and since you are so low this probably doesn't apply to you. But for those of us taking more prednisone, our blood tests may seem normal because the prednisone itself reduces inflammation. For 20% of us (me included) our blood work was and is normal. No elevated CRP or ESR. So PMR is not always reflected in blood work. Our symptoms and our response to prednisone is how we are diagnosed and treated.

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spainishlady | @spainishlady | Aug 29, 2022

Thanks for adding me to the group .
I am 64 and was diagnosed by my GP with PMR 10 weeks ago , all my bloods were in normal range but classic symptoms . Shoulder , hip and thigh pains /stiffness with extreme fatigue .
Started on 15mg Pred for 3 weeks then down to 10mg for 4, after that to start tapering by 1mg every 4 weeks . First 3 or 4 days on 9 mg were OK but since then I have become increasingly worse , in fact it’s getting worse than a few weeks ago . I have increased to 12 mg over the last 3 days but not helping . I think perhaps I need to go back up to 15mg and tapper more slowly , any thoughts ?
Sorry if that was a little drawn out . Thanks

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 29, 2022
In reply to @spainishlady "Thanks for adding me to the group . I am 64 and was diagnosed by my..." + (show)
@spainishlady

Thanks for adding me to the group .
I am 64 and was diagnosed by my GP with PMR 10 weeks ago , all my bloods were in normal range but classic symptoms . Shoulder , hip and thigh pains /stiffness with extreme fatigue .
Started on 15mg Pred for 3 weeks then down to 10mg for 4, after that to start tapering by 1mg every 4 weeks . First 3 or 4 days on 9 mg were OK but since then I have become increasingly worse , in fact it’s getting worse than a few weeks ago . I have increased to 12 mg over the last 3 days but not helping . I think perhaps I need to go back up to 15mg and tapper more slowly , any thoughts ?
Sorry if that was a little drawn out . Thanks

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Hi @spainishlady, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic here - PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/. If you click the link it will take you to the beginning of the discussion so that you can read through the posts by other members who have shared their experiences.

I don't have a medical background or training but I have had two occurrences of PMR which is currently in remission since 2018. I was started on 20 mg prednisone for both occurrences by my rheumatologist. The first time it took 3-1/2 years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it with little to no pain on my pain scale. My rheumatologist suggested I keep a daily pain log along with the dosage to track my tapering. He also said I may not be able to taper if my pain was too much based on my own scale not his. I never tapered down if my pain was above a 2 on my pain scale.

My thoughts would be to go back to the last dosage that you felt good at when getting up the next morning and start from there and possible taper with smaller drops in dosage if possible. Generally even if I had a little pain in the morning it would get better after moving around some and taking my next dose of prednisone.

Do you track your pain and the dosage amount?

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1 reply
spainishlady | @spainishlady | Aug 29, 2022
In reply to @johnbishop "Hi @spainishlady, Welcome to Connect. You will notice that we moved your post to an existing..." + (show)
@johnbishop

Hi @spainishlady, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic here - PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/. If you click the link it will take you to the beginning of the discussion so that you can read through the posts by other members who have shared their experiences.

I don't have a medical background or training but I have had two occurrences of PMR which is currently in remission since 2018. I was started on 20 mg prednisone for both occurrences by my rheumatologist. The first time it took 3-1/2 years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it with little to no pain on my pain scale. My rheumatologist suggested I keep a daily pain log along with the dosage to track my tapering. He also said I may not be able to taper if my pain was too much based on my own scale not his. I never tapered down if my pain was above a 2 on my pain scale.

My thoughts would be to go back to the last dosage that you felt good at when getting up the next morning and start from there and possible taper with smaller drops in dosage if possible. Generally even if I had a little pain in the morning it would get better after moving around some and taking my next dose of prednisone.

Do you track your pain and the dosage amount?

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Hi John ,
Thanks for your reply and confirming what I thought . Go back to the most comfortable dose and yes keeping a log is a great idea . I will speak to my GP tomorrow .

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kmeikle1 | @kmeikle1 | Aug 30, 2022
In reply to @spainishlady "Thanks for adding me to the group . I am 64 and was diagnosed by my..." + (show)
@spainishlady

Thanks for adding me to the group .
I am 64 and was diagnosed by my GP with PMR 10 weeks ago , all my bloods were in normal range but classic symptoms . Shoulder , hip and thigh pains /stiffness with extreme fatigue .
Started on 15mg Pred for 3 weeks then down to 10mg for 4, after that to start tapering by 1mg every 4 weeks . First 3 or 4 days on 9 mg were OK but since then I have become increasingly worse , in fact it’s getting worse than a few weeks ago . I have increased to 12 mg over the last 3 days but not helping . I think perhaps I need to go back up to 15mg and tapper more slowly , any thoughts ?
Sorry if that was a little drawn out . Thanks

Jump to this post

@spainishlady I would say your trouble started when you dropped from 15 straight to 10. Dropping 10% is pretty safe. 10 mg. was likely not enough prednisone and the inflammation began to accumulate. That caused a flare. Typical flare treatment is to go up 5 mgs. until you stabilize and then go back to where you last felt good. Going back to 15 to stabilize and then starting a slow taper (no lower than 12.5) should work.

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tracykarran | @tracykarran | Sep 26, 2022
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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Hello and thank you for your information! I go to see my rheumatologist this Wednesday, September 28 and discuss the next process. I’m currently on 1 mg of prednisone but starting to get some of my relapse symptoms of PMR back not too bad but is a bit concerning. I will follow everybody’s postings

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