1. < Polymyalgia Rheumatica (PMR)
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Conflict with Rheumatologist over taking Prednisone for PMR in AM/PM

Posted by brian1950 @brian1950, Jul 15, 2024

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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jabrown0407 | @jabrown0407 | May 28 11:07am
In reply to @kjoed53 "@elizterrel I'm not sure why anyone stays with a doctor that doesn't listen and that they..." + (show)
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@elizterrel
I'm not sure why anyone stays with a doctor that doesn't listen and that they clash with. My rheumatologist listens to me and allows me to follow what my body is telling me in most situations. If he disagrees, he provides clear and logical reasons why he disagrees. It's not always about today. PMR must be managed all the way to the exit ramp. If I suggest something that interferes with the exit strategy then I want to know.

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@kjoed53 You do realize there is no real PMR Exit ramp. It is chronic and the best there you can find is a Remission Ramp. All autoimmune problems are chronic - no exit ramp for any of the known autoimmune problems.

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kjoed53 | @kjoed53 | May 28 12:22pm
In reply to @jabrown0407 "@kjoed53 You do realize there is no real PMR Exit ramp. It is chronic and the..." + (show)
Profile picture for jabrown0407 @jabrown0407

@kjoed53 You do realize there is no real PMR Exit ramp. It is chronic and the best there you can find is a Remission Ramp. All autoimmune problems are chronic - no exit ramp for any of the known autoimmune problems.

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@jabrown0407
There's an exit ramp for prednisone and the current PMR flare, with the hope that it doesn't return. Some are lucky and some are not, but then again I don't believe that PMR is one single disorder. It's more like a group of similar disorders. That's why we have similar but different symptoms, similar but different prednisone doses and similar but different outcomes. Maybe I'm wrong but there's no surefire test for PMR so it's a diagnosis of exclusion. That's cause for thought.

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jabrown0407 | @jabrown0407 | May 28 2:09pm
In reply to @kjoed53 "@jabrown0407 There's an exit ramp for prednisone and the current PMR flare, with the hope that..." + (show)
Profile picture for kjoed53 @kjoed53

@jabrown0407
There's an exit ramp for prednisone and the current PMR flare, with the hope that it doesn't return. Some are lucky and some are not, but then again I don't believe that PMR is one single disorder. It's more like a group of similar disorders. That's why we have similar but different symptoms, similar but different prednisone doses and similar but different outcomes. Maybe I'm wrong but there's no surefire test for PMR so it's a diagnosis of exclusion. That's cause for thought.

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@kjoed53 Totally agree and have stated it and restated it in this forum multiple times myself. Some people are never able to get off prednisone - some people on here have been under treatment for 10 years and more. I'm pushing 8 myself. I can taper down to zero, all is fine - labs good and I feel good. Then within 90 days I am having a flare. Very frustrating. Tried Tyenne biologic had adverse reaction, back to just steroids for now. I wish you success in your efforts. One and done!

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kjoed53 | @kjoed53 | May 28 3:22pm
In reply to @jabrown0407 "@kjoed53 Totally agree and have stated it and restated it in this forum multiple times myself...." + (show)
Profile picture for jabrown0407 @jabrown0407

@kjoed53 Totally agree and have stated it and restated it in this forum multiple times myself. Some people are never able to get off prednisone - some people on here have been under treatment for 10 years and more. I'm pushing 8 myself. I can taper down to zero, all is fine - labs good and I feel good. Then within 90 days I am having a flare. Very frustrating. Tried Tyenne biologic had adverse reaction, back to just steroids for now. I wish you success in your efforts. One and done!

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@jabrown0407
Thanks, I have SMM in addition to the PMR so I have no option but get off the prednisone, at least long enough to get a true picture of my SMM with clean blood work and probably a 2nd bone marrow biopsy.

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eparnold0219 | @eparnold0219 | May 29 12:29pm
In reply to @kjoed53 "@jabrown0407 There's an exit ramp for prednisone and the current PMR flare, with the hope that..." + (show)
Profile picture for kjoed53 @kjoed53

@jabrown0407
There's an exit ramp for prednisone and the current PMR flare, with the hope that it doesn't return. Some are lucky and some are not, but then again I don't believe that PMR is one single disorder. It's more like a group of similar disorders. That's why we have similar but different symptoms, similar but different prednisone doses and similar but different outcomes. Maybe I'm wrong but there's no surefire test for PMR so it's a diagnosis of exclusion. That's cause for thought.

Jump to this post

@kjoed53 I was told the same thing you said. For some, PMR is a one and done, typically disappearing after a potential couple years.
.
.

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1 reply
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kjoed53 | @kjoed53 | May 29 1:26pm
In reply to @eparnold0219 "@kjoed53 I was told the same thing you said. For some, PMR is a one and..." + (show)
Profile picture for eparnold0219 @eparnold0219

@kjoed53 I was told the same thing you said. For some, PMR is a one and done, typically disappearing after a potential couple years.
.
.

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@eparnold0219
Those are the people no longer posting...lol

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