1. < Polymyalgia Rheumatica (PMR)

PMR - possible diagnosis

Posted by nancy53 @nancy53, Dec 29, 2023

I have developed what my PCP theorizes is PMR. First available appointment with a Rheumatologist is in February. Meanwhile, it has been a huge and painful life altering experience. My shoulders have been immobile some mornings and my hips don't want to function either. A couple of hours into the morning I feel better and can move. I was given Prednisone (game changer) dosed at 30mg every other day. I've researched the negative aspects - but it really does help. I'm trying acupuncture, PT, and I've cleaned my diet up drastically. No sugar, refined foods, red meat, processed food, etc. Nothing that can be considered inflammatory passes my lips! I just turned 70, am fit, did Yoga everyday for 4 years prior to this malady striking me. I take Turmeric with black pepper 3 times a day. Light exercise seems to help a bit. Thanks for listening, this has been a very scary 2 months. Any other anecdotal suggestions for symptom control? Thankful I found this support group, My body can't do much, but my brain can!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | Dec 30, 2023
In reply to @nancy53 "Thank you for more information. I completely understand why my PCP was reluctant to continue to..." + (show)
@nancy53

Thank you for more information. I completely understand why my PCP was reluctant to continue to prescribe. I also understand why my dermatologist knew I needed more help.

Bottom line is, I hope to be on Prednisone for a short time, and will gladly trade the consequences of it for the pain relief. I still hurt, but I can function.

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"I hope to be on Prednisone for a short time, and will gladly trade the consequences of it for the pain relief."

This is the sad part about being in pain. It wasn't that I wanted to "feel good" --- I just could NOT endure all of the pain! Most of the pain wasn't even PMR. However, PMR ushered in a state of "systemic inflammation."

I was willing to do anything to make the pain stop no matter what the consequences were. Realistically, I don't think I had any other choice at the time. If I could do it all over again ... I would probably still take prednisone even knowing what I know now. Even though I don't understand much of anything.

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nancy53 | @nancy53 | Dec 30, 2023
In reply to @dadcue ""I hope to be on Prednisone for a short time, and will gladly trade the consequences..." + (show)
@dadcue

"I hope to be on Prednisone for a short time, and will gladly trade the consequences of it for the pain relief."

This is the sad part about being in pain. It wasn't that I wanted to "feel good" --- I just could NOT endure all of the pain! Most of the pain wasn't even PMR. However, PMR ushered in a state of "systemic inflammation."

I was willing to do anything to make the pain stop no matter what the consequences were. Realistically, I don't think I had any other choice at the time. If I could do it all over again ... I would probably still take prednisone even knowing what I know now. Even though I don't understand much of anything.

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The pain is incredible.

The only time I've ever experienced anything remotely severe was during childbirth. That only lasted 8 hours and I had a wonderful reward for it!

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cpd54 | @cpd54 | Dec 31, 2023
In reply to @nancy53 "You have made me feel so much better. I appreciate your comments soooo much. This malady..." + (show)
@nancy53

You have made me feel so much better. I appreciate your comments soooo much.

This malady is entirely baffling. It's been 2 months, and when I occasionally feel almost normal, I get hopeful that it will be short lived.

I sure have learned PATIENCE - that's never been my strong suit.

I'll add K2 and melatonin.

Thank you!

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@nancy53
If you’re adding K2 to protect against atherosclerosis make sure it’s MK7
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7238900/.

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jfannarbor | @jfannarbor | Dec 31, 2023
In reply to @seniormed "When I read your your history I knew you would do well managing with PMR. You..." + (show)
@seniormed

When I read your your history I knew you would do well managing
with PMR. You are doing everything appropriately.Your risk for side effects
from steroids will be minimized with your lifestyle and compliance.
I was fortunate to get diagnosed early as I had a family history of PMR.
My anti-inflammation routine includes D3/K2, turmeric, melatonin, vitamin C,
gluten limitation, pure stevia in place of sugar and low dose statins for mitigating the atherosclerosis with autoimmunity. Stress reduction and meditation important in my day as well. Off steroids for several years after
very slow weaning. You have a great plan.
a

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I have had PMR for 30 years off and on and now on. I have not heard about " low dose statins for mitigating the atherosclerosis with autoimmunity". Any references? I have an odd adverse reaction to statins so I am on Praluent.

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nancy53 | @nancy53 | Dec 31, 2023

How do you cope best mentally?

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pb50 | @pb50 | Dec 31, 2023
In reply to @jfannarbor "I have had PMR for 30 years off and on and now on. I have not..." + (show)
@jfannarbor

I have had PMR for 30 years off and on and now on. I have not heard about " low dose statins for mitigating the atherosclerosis with autoimmunity". Any references? I have an odd adverse reaction to statins so I am on Praluent.

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I’ve seen references online to this immune-modulating property. In a sample of one, I’m RA with moderate to severe disease status and since a year ago. also on low statin for arteriosclerosis. I don’t think it’s changed anything in my case.

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aboucat66 | @aboucat66 | Jan 2 6:51am

Sounds like you're on top of it.
I've just begun as you But not nearly as healthy. Working toward that. Good luck and wish you well.

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nancy53 | @nancy53 | Jan 2 7:54am
In reply to @aboucat66 "Sounds like you're on top of it. I've just begun as you But not nearly as..." + (show)
@aboucat66

Sounds like you're on top of it.
I've just begun as you But not nearly as healthy. Working toward that. Good luck and wish you well.

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Work is the right term for it. It's hard and I'm afraid I'm impatient.

This magnitude of pain would have been unfathomable 3 months ago. Still is.

Good luck to you as well. This support group has been a lifeline.

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cgm | @cgm | Jan 14 10:02am

Regarding diet, my rheumatologist recommended gluten free and that has helped. I’m still on prednisone (finally down to 2.5 mg) and find that daily exercise is a must. It’s counter-intuitive when we’re in pain to exercise, but whether just walking or an exercise bike, the benefits can be significant. My rheumatologist also teaches his clients tai chi and you could explore that online if there are no groups near you. Best to you! I’m also grateful for this group❤️

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