1. < Polymyalgia Rheumatica (PMR)

I’m Not Responding to Prednisone and I Need Advice

Posted by cliffg26 @cliffg26, Oct 28, 2023

I was diagnosed with PMR last March. My doctor prescribed 15 mg of Prednisone and then reduced that to 12.5. There wasn’t much improvement and recently he increased the dosage to 20 mg. He also referred me to a rheumatologist with whom I have an appointment in four months. Things move slowly here.

I’m very tired all the time and I spend most of my days sitting at my computer or sleeping. The pain and fatigue make it impossible to accomplish much. I would appreciate any suggestions.

Thanks,
Cliff

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jiminmich | @jiminmich | Oct 30, 2023
In reply to @richardab "Excellent advice from John. You need a complete workup to rule out something else which may..." + (show)
@richardab

Excellent advice from John. You need a complete workup to rule out something else which may be affecting you. Hopefully your rheumatologist does this. When I had a persistent lung nodule years ago, my pulmonologist ordered some more exotic tests including immunoglobulin assays, which showed I had Smoldering Myeloma. I share your pain getting to see a rheumatologist, its takes forever in my area.

Jump to this post

Hi Folks,
A correction to mine response a day ago.. I as well have not heard anything from my referral for the rheumatologist. But (story) a friend in dire
need was luck enough to see a down state rheumatologist on his lunch hour. Blessed dedicated professionals like him.
We need professionals who can help and can the get there expertise to others whom can not wait months and months...?
In a different direction it seems this PMR seeks aged, and actually finds a weakness in our past medical history to manifest itself.. the weakest link.
I know it sounds perhaps silly and simple, but is an observation.

REPLY
1 reply
DadCue | @dadcue | Oct 30, 2023
In reply to @cliffg26 "Yes, but I'm not sure how to interpret the numbers. He mentioned the sedimentation rate. It..." + (show)
@cliffg26

Yes, but I'm not sure how to interpret the numbers. He mentioned the sedimentation rate. It was 81 on 3/23, 65 on 5/4, and 87 on 9/18.

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An erythrocyte sedimentation rate (ESR) is a blood test that can show if you have inflammation in your body.

ESR is measured in millimeters per hour (mm/hr). The normal values are:
0 to 15 mm/hr in men
0 to 20 mm/hr in women
ESR above 100 mm/hr is most likely caused by an active disease that causes inflammation in your body.

Many things can cause an elevated ESR. Your test only says moderate inflammation is present but it says nothing about what is causing the inflammation.

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DadCue | @dadcue | Oct 30, 2023
In reply to @cliffg26 "The Tylenol reduces the pain. Without it I would be bedridden." + (show)
@cliffg26

The Tylenol reduces the pain. Without it I would be bedridden.

Jump to this post

Tylenol is not an anti-inflammatory medication. It is widely used for treatment of mild pain and fever. PMR usually doesn't respond to Tylenol because it doesn't reduce the inflammation.

Prednisone is a potent anti-inflammatory medication and should be reducing your ESR much more than it is. Ideally, when a person has PMR, their ESR would be in the normal range if they take enough prednisone. Your prednisone dose might not be high enough but your doctor needs to determine why your ESR is high.

An infection can cause a high ESR and you wouldn't want to take prednisone if you have an infection. Prednisone suppresses your immune system and makes it harder to fight an infection.

REPLY
2 replies
jiminmich | @jiminmich | Oct 30, 2023
In reply to @dadcue "Tylenol is not an anti-inflammatory medication. It is widely used for treatment of mild pain and..." + (show)
@dadcue

Tylenol is not an anti-inflammatory medication. It is widely used for treatment of mild pain and fever. PMR usually doesn't respond to Tylenol because it doesn't reduce the inflammation.

Prednisone is a potent anti-inflammatory medication and should be reducing your ESR much more than it is. Ideally, when a person has PMR, their ESR would be in the normal range if they take enough prednisone. Your prednisone dose might not be high enough but your doctor needs to determine why your ESR is high.

An infection can cause a high ESR and you wouldn't want to take prednisone if you have an infection. Prednisone suppresses your immune system and makes it harder to fight an infection.

Jump to this post

When it comes to Prednisone the prescribed amount I seen is 100mg...not my wheelhouse.

REPLY
1 reply
cliffg26 | @cliffg26 | Oct 30, 2023
In reply to @dadcue "Tylenol is not an anti-inflammatory medication. It is widely used for treatment of mild pain and..." + (show)
@dadcue

Tylenol is not an anti-inflammatory medication. It is widely used for treatment of mild pain and fever. PMR usually doesn't respond to Tylenol because it doesn't reduce the inflammation.

Prednisone is a potent anti-inflammatory medication and should be reducing your ESR much more than it is. Ideally, when a person has PMR, their ESR would be in the normal range if they take enough prednisone. Your prednisone dose might not be high enough but your doctor needs to determine why your ESR is high.

An infection can cause a high ESR and you wouldn't want to take prednisone if you have an infection. Prednisone suppresses your immune system and makes it harder to fight an infection.

Jump to this post

It sounds like I'm confused about Tylenol. I'll talk with my doctor about reducing my dose. Thanks for the info.

REPLY
richardab | @richardab | Oct 30, 2023
In reply to @jiminmich "Hi Folks, A correction to mine response a day ago.. I as well have not heard..." + (show)
@jiminmich

Hi Folks,
A correction to mine response a day ago.. I as well have not heard anything from my referral for the rheumatologist. But (story) a friend in dire
need was luck enough to see a down state rheumatologist on his lunch hour. Blessed dedicated professionals like him.
We need professionals who can help and can the get there expertise to others whom can not wait months and months...?
In a different direction it seems this PMR seeks aged, and actually finds a weakness in our past medical history to manifest itself.. the weakest link.
I know it sounds perhaps silly and simple, but is an observation.

Jump to this post

PMR is definitely much more prevalent in those who are older.

REPLY
johnbesaw | @johnbesaw | Oct 30, 2023

My doctor just told me after a month waiting for results that I had PDR prescribed 5 mgs of prednisone per day.
I have been taking it for a week now and no signs of improvement yet. I have to wait another month for my next appointment. I feel like doubling it after reading all the comments above. Can it take 2 weeks to get results?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 30, 2023
In reply to @johnbesaw "My doctor just told me after a month waiting for results that I had PDR prescribed..." + (show)
@johnbesaw

My doctor just told me after a month waiting for results that I had PDR prescribed 5 mgs of prednisone per day.
I have been taking it for a week now and no signs of improvement yet. I have to wait another month for my next appointment. I feel like doubling it after reading all the comments above. Can it take 2 weeks to get results?

Jump to this post

Welcome @johnbesaw, I think most starting doses for PMR are within the 15 mg to 25 mg of prednisone range. I can't imagine that 5 mg would relieve the pain. Here's more information on the topic:

"The mainstay of treatment of PMR is oral prednisone therapy. According to the latest EULAR/ACR guidelines, prednisone therapy should be within the range of 12.5 to 25 mg, using the minimum effective dosage to achieve remission. Tapering should be individualized once remission is achieved."
--- Polymyalgia rheumatica: An updated review: https://www.ccjm.org/content/87/9/549

Are you able to call your doctor or get a referral to a rheumatologist for a second opinion?

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johnbesaw | @johnbesaw | Oct 31, 2023

It takes a month to talk to a doctor again. Thanks for the info page, it was helpful. Frustrating experience for sure.

REPLY
art43 | @art43 | Nov 1, 2023
In reply to @johnbesaw "My doctor just told me after a month waiting for results that I had PDR prescribed..." + (show)
@johnbesaw

My doctor just told me after a month waiting for results that I had PDR prescribed 5 mgs of prednisone per day.
I have been taking it for a week now and no signs of improvement yet. I have to wait another month for my next appointment. I feel like doubling it after reading all the comments above. Can it take 2 weeks to get results?

Jump to this post

I had severe pain. Initial dose of 20 did nothing. After 4 days, doc increased dose to 30. Pain gone in 24 hours. Started taper of 5 mg every 2 weeks. Now down to 20. Still no pain ever.

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