1. < Polymyalgia Rheumatica (PMR)

Conflict with Rheumatologist over taking Prednisone for PMR in AM/PM

Posted by brian1950 @brian1950, Jul 15 4:12am

I was diagnosed with PMR 4 weeks ago and when I first started I was taking Prednisone at various times of the day and what I discovered was that it worked perfectly for me when I took it in the evening a few hours before bedtime. If I took the same dose in the AM instead, I would wake up with pain and stiffness that I would not have ,had I taken in at night. The rub is my doctor is trying desperately for me to take all in the AM or split dosage in AM and PM. It’s frustrating when my body is telling me smaller PM dosages work perfectly. WHY SO MUCH PUSH BACK? Does anyone else take it at night?

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jlo2252 | @jlo2252 | Jul 20 8:01am
In reply to @kasandphyl1 "Hello, my name is Kas and I have Polymyalgia. It was discovered while I was in..." + (show)
@kasandphyl1

Hello, my name is Kas and I have Polymyalgia. It was discovered while I was in the hospital with an attack and it sent my A-fib over the wall. They were only trying to get my A-Fib under control because they didn't know why I was hurting so much in my jaw, hand and fingers and both shoulders. I went to the hospital 2 times before they discovered that Prednisone helped me get out of the pain that I was in, and told me to see a Rheumatologist. I went and she has me on Prednisone. When I get a bout I have to take 5 ml - 3 times a day for 3 days.....2 x a day for 3 days and finally 1 until I see her again. I have read about this drug and I know it has consequences and a long time to get out of your system if you stop. I was always told to not take it before bed time because it can keep you awake and anxious. If I have to I do not take it past 6:oop.m. I have also been on Amazon and bought a shoulder brace and wrist brace which help me greatly when I have these bouts. Get the ones that are only around $16-20.00.....don't spend a lot of money that you do not have to. Also get the ones that work for both right and left side of your body, so that you do not have to buy 2 of each. I also am having very low blood pressure and dizziness. Don't know why.

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Hi.. not sure what is causing your symptoms, but I know a lot of medication interactions can cause problems. Low blood pressure itself can cause dizziness! Since you have A FIB I would bring these concerns up to your PCP just to be sure asap.
Best wishes on your health journey.

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sandmason | @sandmason | Jul 26 9:41am

I recently watched a very new video with a rheumatology expert on YouTube who advised splitting doses, against the old standard of morning doses. You know, not much attention is paid to PMR, not much research, and many rheums know little about it.
I finally saw a really nasty rheum who told me I should have gone to an Internal Medicine doc instead. He refused to take me as a patient and asked, stupidly, why I was already on prednisone, 8 months in with an experienced internist in the house. Dumbfounded by that question, I asked him if he had any idea how painful this is? He said, "No, I don't."
For me, starting on 20 with just my husband's advice, I couldn't make it through the night until I split the dose, 4am and 4pm. I woke up in agony at 2am.

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1 reply
megz | @megz | Jul 26 6:52pm
In reply to @sandmason "I recently watched a very new video with a rheumatology expert on YouTube who advised splitting..." + (show)
@sandmason

I recently watched a very new video with a rheumatology expert on YouTube who advised splitting doses, against the old standard of morning doses. You know, not much attention is paid to PMR, not much research, and many rheums know little about it.
I finally saw a really nasty rheum who told me I should have gone to an Internal Medicine doc instead. He refused to take me as a patient and asked, stupidly, why I was already on prednisone, 8 months in with an experienced internist in the house. Dumbfounded by that question, I asked him if he had any idea how painful this is? He said, "No, I don't."
For me, starting on 20 with just my husband's advice, I couldn't make it through the night until I split the dose, 4am and 4pm. I woke up in agony at 2am.

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The comment from that rheumatologist you initially saw shows that he had no understanding of the reality and intensity of PMR pain. This seems to have been a PMR problem from the beginning.

A video post by @dadcue titled "Polymyalgia Rheumatica: What has changed since 1957?" includes an initial description of PMR in 1957, which said:
"The somewhat melodramatic description of their pain by these patients tends to suggest a diagnosis of psychoneurosis until the ESR has been measured."
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
"Melodramatic", "psychoneurosis". I'm having trouble finding polite words to describe how I feel about those labels. The words that come immediately to mind would get me expelled from this forum.

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3 replies
brian1950 | @brian1950 | Jul 27 10:46pm
In reply to @tuckerp "I guess you could read from the chart that it tails off fast but it still..." + (show)
@tuckerp

I guess you could read from the chart that it tails off fast but it still says between 6a - 9am is the highest all day. Yes it tails off but I dont read the chart contradicting anything that was said. Its highest in the morning and tails off to nothing but midnight. I did read somewhere, to lazy to go look, that people that work night shift or up during the evening manage to manipulate their circadian rhythm. It definitely was not me. I worked third shift for about a year. About died from no sleep. I think Brian1950 original question was why the Rhumy pushback. I think this is a good explanation but only his DR knows. I say whatever works best. Maybe Brian1950 sleeps all day. I take about an hour nap.

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Lol, since I have been on prednisone i can’t seem to shut down during the day, the lack of body pain has increased my energy levels and motivation to levels that I have not felt in years. Napping during the day was what I used to do, not now. As far as sleeping at night I don’t seem to need as much as I did before and wake up much more refreshed and alert than I did before. Not sure how much age plays a role in all this but I am 74.

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1 reply
megz | @megz | Jul 27 11:04pm
In reply to @brian1950 "Lol, since I have been on prednisone i can’t seem to shut down during the day,..." + (show)
@brian1950

Lol, since I have been on prednisone i can’t seem to shut down during the day, the lack of body pain has increased my energy levels and motivation to levels that I have not felt in years. Napping during the day was what I used to do, not now. As far as sleeping at night I don’t seem to need as much as I did before and wake up much more refreshed and alert than I did before. Not sure how much age plays a role in all this but I am 74.

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A bigger role might be played by the dosage you're on. When I first started on prednisolone I was full of beans and got a lot of yard work done. As the dosage decreased, the energy reduced. What dose are you on and when do you take it?

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pargeo47 | @pargeo47 | Jul 28 9:50am
In reply to @megz "The comment from that rheumatologist you initially saw shows that he had no understanding of the..." + (show)
@megz

The comment from that rheumatologist you initially saw shows that he had no understanding of the reality and intensity of PMR pain. This seems to have been a PMR problem from the beginning.

A video post by @dadcue titled "Polymyalgia Rheumatica: What has changed since 1957?" includes an initial description of PMR in 1957, which said:
"The somewhat melodramatic description of their pain by these patients tends to suggest a diagnosis of psychoneurosis until the ESR has been measured."
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
"Melodramatic", "psychoneurosis". I'm having trouble finding polite words to describe how I feel about those labels. The words that come immediately to mind would get me expelled from this forum.

Jump to this post

I've had shingles (2007) and simultaneously ruptured discs at L4 and L5 (2011). PMR pain in my shoulders and hips made both experiences pale in comparison. Being in so much pain, one is fearful to go to bed and, thus getting less than 3 hours sleep each night, is neither melodramatic nor psychoneurotic. The fact that there isn't a particular protocol treatment that works for everyone should be a telltale sign for rheumatologists to accept flexibility in dosing schedule. Tapering by 1 mg every 2 weeks from 17 mg/day initially and now down to 10 mg...always taking all in the morning has so far worked for me. I'm planning on switching to .5 mg taper, now that I'll be in single digits with the next reduced daily dose.

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jlo2252 | @jlo2252 | Jul 29 5:57am
In reply to @megz "The comment from that rheumatologist you initially saw shows that he had no understanding of the..." + (show)
@megz

The comment from that rheumatologist you initially saw shows that he had no understanding of the reality and intensity of PMR pain. This seems to have been a PMR problem from the beginning.

A video post by @dadcue titled "Polymyalgia Rheumatica: What has changed since 1957?" includes an initial description of PMR in 1957, which said:
"The somewhat melodramatic description of their pain by these patients tends to suggest a diagnosis of psychoneurosis until the ESR has been measured."
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
"Melodramatic", "psychoneurosis". I'm having trouble finding polite words to describe how I feel about those labels. The words that come immediately to mind would get me expelled from this forum.

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Megz, I agree with you 100%!!! 🤐😡😂

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mtr2601 | @mtr2601 | Jul 29 2:44pm
In reply to @megz "The comment from that rheumatologist you initially saw shows that he had no understanding of the..." + (show)
@megz

The comment from that rheumatologist you initially saw shows that he had no understanding of the reality and intensity of PMR pain. This seems to have been a PMR problem from the beginning.

A video post by @dadcue titled "Polymyalgia Rheumatica: What has changed since 1957?" includes an initial description of PMR in 1957, which said:
"The somewhat melodramatic description of their pain by these patients tends to suggest a diagnosis of psychoneurosis until the ESR has been measured."
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
"Melodramatic", "psychoneurosis". I'm having trouble finding polite words to describe how I feel about those labels. The words that come immediately to mind would get me expelled from this forum.

Jump to this post

This attitude of negating the patient experience seems to be quite common in Rheumatology. I have seen it described here many times and have experienced it myself. It's a difficult field of medicine, the disease is not well understood, symptoms vary widely, treatment options are limited and come with so many adverse side effects and patients generally have to figure things out for themselves, resulting in a lot of potential conflict. Its no excuse for the bullying, gaslighting and rudeness that so many of us seem to encounter but considering things from their POV has helped me to cope with it and stand my ground.

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mtr2601 | @mtr2601 | Jul 29 2:54pm

Just curious, would you describe yourself as a night person, do you normally have trouble getting moving in the morning but can get lots of things done in the evening ? That might be a clue as to why the Prednisone works better for you when taking it in the evening ?

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