1. < Polymyalgia Rheumatica (PMR)

Breakthrough Pain?

Posted by vellen @vellen, Jun 11, 2023

A couple questions; I was on 15mg prednisone for two weeks beginning May 23. I was directed to lower that to 12.5 on the 8th. I am experiencing breakthrough pain in the morning and today it's lasting longer than the previous two days, neck and now lower back as well. I'm wondering if I need to ask about going up one mg or so, I do take Tramadol for fibromyalgia but it doesn't help the PMR pain so I doubt he would add more pain relief.
The other question. is the prednisone only to treat the inflammatory symptoms until it resolves? I initially thought it was a cure that, as it turns out, can take a long time but I'm not finding information about that.
Thanks, Vikki

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pkalkstein | @pkalkstein | Jun 11, 2023

Prednisone is not a cure for PMR. Since the cause and nature of our disease are not well understood, science is not likely to find a cure except by accident, unless a whole lot more money is devoted to studying PMR. The function of prednisone is to control the inflammation that brings us pain. Another function MAY be to deter Giant Cell Arteritis, which is quite serious, but which afflicted no one taking prednisone in a large study I read about. So we may hate the side effects of prednisone, but should use enough to keep the pain away, and not taper down too fast. The median duration of PMR is about 6 years and some people are on prednisone for much longer.

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3 replies
vellen | @vellen | Jun 11, 2023
In reply to @pkalkstein "Prednisone is not a cure for PMR. Since the cause and nature of our disease are..." + (show)
@pkalkstein

Prednisone is not a cure for PMR. Since the cause and nature of our disease are not well understood, science is not likely to find a cure except by accident, unless a whole lot more money is devoted to studying PMR. The function of prednisone is to control the inflammation that brings us pain. Another function MAY be to deter Giant Cell Arteritis, which is quite serious, but which afflicted no one taking prednisone in a large study I read about. So we may hate the side effects of prednisone, but should use enough to keep the pain away, and not taper down too fast. The median duration of PMR is about 6 years and some people are on prednisone for much longer.

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And my doctor said six months. Thank you for the information, it is what I feared.

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grammy82 | @grammy82 | Jun 11, 2023
In reply to @pkalkstein "Prednisone is not a cure for PMR. Since the cause and nature of our disease are..." + (show)
@pkalkstein

Prednisone is not a cure for PMR. Since the cause and nature of our disease are not well understood, science is not likely to find a cure except by accident, unless a whole lot more money is devoted to studying PMR. The function of prednisone is to control the inflammation that brings us pain. Another function MAY be to deter Giant Cell Arteritis, which is quite serious, but which afflicted no one taking prednisone in a large study I read about. So we may hate the side effects of prednisone, but should use enough to keep the pain away, and not taper down too fast. The median duration of PMR is about 6 years and some people are on prednisone for much longer.

Jump to this post

@pkalkstein
I'm writing just to say how important and clear I think your post is.....it is powerful in its simplicity.

PMR/GCA...we don't get cured, and prednisone allows us to manage the pain, taper slowly and stave off GCA. It is a double-edged sword but I'd be lost without it.

I was ill for months and diagnosed with the flu...probably PMR and it ramped into GCA and I lost sight in one eye. Then and only then did I get a proper diagnosis. I've been on Actemra and Pred for three years and am now at 3mg plus weekly injections. No complaints about pred from me.

Thanks @pkalkstein !💞

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vellen | @vellen | Jun 11, 2023

Thank you for your input, it is much appreciated.

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pkalkstein | @pkalkstein | Jun 11, 2023

Thank you, grammy82. We are all learning about this disease, from day to day. It is a long slog. In Shakespeare's play King Lear, Lear pleads: "You heavens, give me that patience, patience I need!" I echo that, patience is the key, hard as it is sometimes to achieve. We will wait this thing out with the help of friends, good doctors, and the right medicine. And we will win!

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nyxygirl | @nyxygirl | Jun 12, 2023

@vellen I think you would get a lot out of looking at this site : https://www.pmrandil6.com/ click through the top tabs over to resources and and scroll down to find the Video About the Pathophysiology of PMR and the Role of Elevated IL-6 in PMR.
I like this figure (below) from Lundberg et al 2022.

Steroids inhibit T-cell activation, proliferation and polarization into Th17 cells. In
addition, they trigger a decrease in the level of serum IL-6.
There are many of us, recently Diagnosed, that did NOT respond 100% to 15 or 20mg prednisone - a rheumatologist increased dose to 30mg for me - the miracle no pain no stiffness occurred next day !! {PS - it appears that a PCP is reluctant to go higher than 15 mg Prednisone - ASK your doctor to go higher ! - see if he/she says you would then need a Rheumatologist consult }
And you need to keep a pain journal ( I can give you some ideas if you wish ) - good luck !!
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1 reply
nyxygirl | @nyxygirl | Jun 12, 2023

@vellen as another point of reference read how these patients describe their pain and stiffness - I had a terrible flare up and "felt like I was glued to the bed "
- also many people SPLIT the dose !

( sorry if i'm giving you a lot of homework ! : ) )

Shared files

Untitled (Untitled.pdf-describing-stiffness-PLOS-one-2015.pdf)

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1 reply
vellen | @vellen | Jun 12, 2023
In reply to @nyxygirl "@vellen as another point of reference read how these patients describe their pain and stiffness -..." + (show)
@nyxygirl

@vellen as another point of reference read how these patients describe their pain and stiffness - I had a terrible flare up and "felt like I was glued to the bed "
- also many people SPLIT the dose !

( sorry if i'm giving you a lot of homework ! : ) )

Jump to this post

I don't mind homework. I have considered a pain journal but hesitate. As mentioned, I've dealt with fibromyakgia for many years. I take medicine for that and still have bad days. I guess it helps me to ignore the level of pain that I can and I've done a pretty good job of it. It wasn't until I couldn't get out of bed or walk withoit help that I realized something else was goong on. Denial is a powerful thing.
Ok that got long.
I'll check out the site. Thank you.

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vellen | @vellen | Jun 12, 2023
In reply to @nyxygirl "@vellen I think you would get a lot out of looking at this site : https://www.pmrandil6.com/..." + (show)
@nyxygirl

@vellen I think you would get a lot out of looking at this site : https://www.pmrandil6.com/ click through the top tabs over to resources and and scroll down to find the Video About the Pathophysiology of PMR and the Role of Elevated IL-6 in PMR.
I like this figure (below) from Lundberg et al 2022.

Steroids inhibit T-cell activation, proliferation and polarization into Th17 cells. In
addition, they trigger a decrease in the level of serum IL-6.
There are many of us, recently Diagnosed, that did NOT respond 100% to 15 or 20mg prednisone - a rheumatologist increased dose to 30mg for me - the miracle no pain no stiffness occurred next day !! {PS - it appears that a PCP is reluctant to go higher than 15 mg Prednisone - ASK your doctor to go higher ! - see if he/she says you would then need a Rheumatologist consult }
And you need to keep a pain journal ( I can give you some ideas if you wish ) - good luck !!

Jump to this post

I'm not keen on seeing a rheumatologist only for the fact that I live out in the country in a small town and it would be an hour and a half drive minimum round trip.

REPLY
1 reply
nyxygirl | @nyxygirl | Jun 13, 2023
In reply to @pkalkstein "Prednisone is not a cure for PMR. Since the cause and nature of our disease are..." + (show)
@pkalkstein

Prednisone is not a cure for PMR. Since the cause and nature of our disease are not well understood, science is not likely to find a cure except by accident, unless a whole lot more money is devoted to studying PMR. The function of prednisone is to control the inflammation that brings us pain. Another function MAY be to deter Giant Cell Arteritis, which is quite serious, but which afflicted no one taking prednisone in a large study I read about. So we may hate the side effects of prednisone, but should use enough to keep the pain away, and not taper down too fast. The median duration of PMR is about 6 years and some people are on prednisone for much longer.

Jump to this post

@pkalkstein --"nature of our disease are not well understood,' I hope recent literature convinces you otherwise -- there are updates on the Pathogenesis of PMR (and GCA) in many of papers i am looking at. I don't even bother with older papers.
Case in point :
Rheumatology
. 2023 Jan 13;keac713. doi: 10.1093/rheumatology/keac713. Online ahead of print.
An international survey of current management practices for polymyalgia rheumatica by general practitioners and rheumatologists

The three American authors are : , Eric L Matteson , Sebastian E Sattui , Mark Matza from:
Mayo Clinic College of Medicine and Science, Division of Rheumatology, Rochester, United States of America.
Division of Rheumatology and Clinical Immunology, Department of Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
1Rheumatology Unit, Massachusetts General Hospital, Boston, United States of America.

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