1. < Polymyalgia Rheumatica (PMR)

ACR Convergence 2023 Nov -Program abstracts are available for view

Posted by nyxygirl @nyxygirl, Sep 14, 2023

Hello all - the abstracts and Program for the American College of Rheumatology are available now. Turns out I made a log-in for the organization when i was first diagnosed with PMR in April 2023.

https://my.rheumatology.org/ACR.

here , for example is one panel discussion : 13M116: Great Debate: Should PMR and GCA Be Treated with Advanced Therapies at Disease Onset?
Monday, November 13, 2023
Polymyalgia rheumatica (PMR) and giant cell arteritis (GCA) are two of the most common inflammatory rheumatic diseases affecting older adults. For decades, glucocorticoids have been the cornerstone of treatments for individuals with these diseases, with some data supporting the use of steroid-sparing agents such as methotrexate. IL-6 inhibitors have been approved and recommended for the treatment of GCA, and more recently approved for treatment of refractory PMR. However, there are several unanswered questions regarding the use of biologic agents in GCA and PMR including ideal timing of initiation, identification of individuals who would benefit from these, and duration of treatment including achieving drug-free remission.

This year's Great Debate showcases two experts in the field who will review the data around use of biologic therapies in PMR and GCA and argue for or against the use of advanced therapies at disease onset.
Learning Objectives:
* Examine the data on use of biologic therapies in management of PMR and GCA.
* Assess the arguments for and against starting biologic therapies upfront at disease diagnosis.
* Describe the best approach to choice of anti-inflammatory therapy in these disorders.

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

DadCue | @dadcue | Sep 14, 2023

"Great Debate: Should PMR and GCA Be Treated with Advanced Therapies at Disease Onset?"

This should be an interesting discussion. I was diagnosed with PMR about 17 years ago but I was only offered Actemra (tocilizumab) about 5 years ago. I often wonder what my life would have been like if Actemra was offered to me sooner. I asked my rheumatologist this question. It was that Actemra wasn't an option 17 years ago. Five years ago, an authorization request had to be submitted. It wasn't very easy to get Actemra approved for me to treat PMR as recently as five years ago.

At least the claim that "prednisone is the only option" has changed a bit. Advances in modern medicine sometimes happens very quickly however actual change occurs very slowly.

Supposedly Kevzara (Sarilumab) is now more readily approved for PMR but insurance companies are still reluctant to pay for it unless "all other options have failed." Sounds to me like the treatment of PMR/GCA with a biologic is still more of a last resort. That was what I was told five years ago when Actemra was offered to me.

REPLY
nyxygirl | @nyxygirl | Feb 9 10:14am

Hello All -- the official publication of the ACR is the "Rheumatologist" and has very recent postings about the November Meeting . Of great interest to me is a summary of the debate about using biologicals at the onset of PMR Dx.
https://www.the-rheumatologist.org/article/the-great-debate-2023/ this summary is several pages .
one thing stood out to me on page two is this rapid taper strategy !
"Dr. Spiera suggested that clinicians consider that PMR is not organ or life threatening, and its disease flares are manageable. He also noted that a relatively rapid glucocorticoid taper is possible in a substantial proportion of patients, even without the introduction of glucocorticoid-sparing therapies. Thus, he advised clinicians to plan a rapid glucocorticoid taper (to zero by month four)". [ Robert Spiera, MD, a rheumatologist and director of the Scleroderma, Vasculitis and Myositis Center at the Hospital for Special Surgery, New York City]

BUT from Dr Seo : Clinicians may also be hesitant about starting with IL-6 inhibition because they don’t think of PMR as requiring high prednisone doses. However, Dr. Seo shared data indicating that patients are often treated with at least 15 milligrams of prednisone daily, with many patients treated at 25 mg or higher.(ref 10) And he noted that even though PMR patients should ideally be tapered off steroids within a year, a meta-analysis found that about half of patients remain on at least some glucocorticoids two years after initiating therapy. (ref 11)

Perhaps the newer patients in the forum SHOULD INSIST on answers - what is their opinion of the current literature regarding initial dose of GC and taper strategy and /or when to resort to Kevzara ? We have discussed elsewhere how difficult it is to get a timely appointment with a Rheumatologist,and seems to be another debate is a specialist even needed for PMR? Frankly , i don't even know how many PMR patients my Rheumatologist sees and what rheumatic disease is her "primary" interest . Looking at the authors of the Abstracts from the meeting can give you an idea of the groups in USA working on PMR .
OH well my current trajectory is zero Prednsone by July - so hopefully only 14 months total . The most annoying side effet has been HAIR LOSS ! Yikes.

REPLY
2 replies
nyxygirl | @nyxygirl | Feb 9 10:23am
In reply to @nyxygirl "Hello All -- the official publication of the ACR is the "Rheumatologist" and has very recent..." + (show)
@nyxygirl

Hello All -- the official publication of the ACR is the "Rheumatologist" and has very recent postings about the November Meeting . Of great interest to me is a summary of the debate about using biologicals at the onset of PMR Dx.
https://www.the-rheumatologist.org/article/the-great-debate-2023/ this summary is several pages .
one thing stood out to me on page two is this rapid taper strategy !
"Dr. Spiera suggested that clinicians consider that PMR is not organ or life threatening, and its disease flares are manageable. He also noted that a relatively rapid glucocorticoid taper is possible in a substantial proportion of patients, even without the introduction of glucocorticoid-sparing therapies. Thus, he advised clinicians to plan a rapid glucocorticoid taper (to zero by month four)". [ Robert Spiera, MD, a rheumatologist and director of the Scleroderma, Vasculitis and Myositis Center at the Hospital for Special Surgery, New York City]

BUT from Dr Seo : Clinicians may also be hesitant about starting with IL-6 inhibition because they don’t think of PMR as requiring high prednisone doses. However, Dr. Seo shared data indicating that patients are often treated with at least 15 milligrams of prednisone daily, with many patients treated at 25 mg or higher.(ref 10) And he noted that even though PMR patients should ideally be tapered off steroids within a year, a meta-analysis found that about half of patients remain on at least some glucocorticoids two years after initiating therapy. (ref 11)

Perhaps the newer patients in the forum SHOULD INSIST on answers - what is their opinion of the current literature regarding initial dose of GC and taper strategy and /or when to resort to Kevzara ? We have discussed elsewhere how difficult it is to get a timely appointment with a Rheumatologist,and seems to be another debate is a specialist even needed for PMR? Frankly , i don't even know how many PMR patients my Rheumatologist sees and what rheumatic disease is her "primary" interest . Looking at the authors of the Abstracts from the meeting can give you an idea of the groups in USA working on PMR .
OH well my current trajectory is zero Prednsone by July - so hopefully only 14 months total . The most annoying side effet has been HAIR LOSS ! Yikes.

Jump to this post

A bit more reading - some of the key players are interviewed !

https://www.healio.com/news/rheumatology/20230511/communication-and-collaboration-essential-to-managing-polymyalgia-rheumatica-gca
REPLY
DadCue | @dadcue | Feb 9 11:50am
In reply to @nyxygirl "Hello All -- the official publication of the ACR is the "Rheumatologist" and has very recent..." + (show)
@nyxygirl

Hello All -- the official publication of the ACR is the "Rheumatologist" and has very recent postings about the November Meeting . Of great interest to me is a summary of the debate about using biologicals at the onset of PMR Dx.
https://www.the-rheumatologist.org/article/the-great-debate-2023/ this summary is several pages .
one thing stood out to me on page two is this rapid taper strategy !
"Dr. Spiera suggested that clinicians consider that PMR is not organ or life threatening, and its disease flares are manageable. He also noted that a relatively rapid glucocorticoid taper is possible in a substantial proportion of patients, even without the introduction of glucocorticoid-sparing therapies. Thus, he advised clinicians to plan a rapid glucocorticoid taper (to zero by month four)". [ Robert Spiera, MD, a rheumatologist and director of the Scleroderma, Vasculitis and Myositis Center at the Hospital for Special Surgery, New York City]

BUT from Dr Seo : Clinicians may also be hesitant about starting with IL-6 inhibition because they don’t think of PMR as requiring high prednisone doses. However, Dr. Seo shared data indicating that patients are often treated with at least 15 milligrams of prednisone daily, with many patients treated at 25 mg or higher.(ref 10) And he noted that even though PMR patients should ideally be tapered off steroids within a year, a meta-analysis found that about half of patients remain on at least some glucocorticoids two years after initiating therapy. (ref 11)

Perhaps the newer patients in the forum SHOULD INSIST on answers - what is their opinion of the current literature regarding initial dose of GC and taper strategy and /or when to resort to Kevzara ? We have discussed elsewhere how difficult it is to get a timely appointment with a Rheumatologist,and seems to be another debate is a specialist even needed for PMR? Frankly , i don't even know how many PMR patients my Rheumatologist sees and what rheumatic disease is her "primary" interest . Looking at the authors of the Abstracts from the meeting can give you an idea of the groups in USA working on PMR .
OH well my current trajectory is zero Prednsone by July - so hopefully only 14 months total . The most annoying side effet has been HAIR LOSS ! Yikes.

Jump to this post

@nyxygirl Thank-you for the article about the debate doctors are having. I was good to read and the debate needs to happen.

I'm just weighing in with my opinion which is based purely on personal experience with Actemra. Someone else's mileage may vary and I don't think Actemra or Kevzara will work for everyone.

Trying an IL-6 inhibitor was a game changer for me. I was able to taper off prednisone in one year as compared to trying to taper off prednisone for 12 years without Actemra.

I think prednisone should be used first simply because it works so quickly and provides fast pain relief. Then it just depends on how the tapering process goes. The goal should be to taper off prednisone as quickly as possible. I don't think there is any magic tapering strategy that works for everyone. Promoting long term prednisone use waiting for PMR to "burn itself out" isn't wise.

For most autoimmune conditions, prednisone is used as a "bridge" to more effective treatments with fewer side effects than prednisone. As long as the "prednisone bridge" isn't too long and the side effects aren't too bad, then people should probably continue on the bridge until they are off prednisone.

My 12 year prednisone bridge was entirely too long. A person who took the same bridge before me said it led her to an adrenal crisis. She warned me to turn back before it was too late.

When my cortisol level was found to be low, it explained many of the symptoms I was having. Adrenal insufficiency was not a good place for me. The overwhelming fatigue and inability to taper off prednisone was doing bad things to me.

Actemra allowed me to decrease my prednisone dose to a low enough dose to allow for the adrenal insufficiency to be exposed. After that, an endocrinologist stepped in and provided some insight into ways to get off prednisone. Time and maintaining a low prednisone dose of < 3 mg for more than 6 months was what it took to regain an "adequate"cortisol level. Only when my cortisol level was adequate was I able to discontinue prednisone. Fortunately, I didn't have complete adrenal failure.

Once I was able to get off prednisone, it took even longer for my adrenals to produce enough cortisol to regulate inflammation on a full time basis. This happened while Actemra enabled me to remain off prednisone.

As far as I know, PMR is now in complete remission. I don't think it is waiting to flare up again like it did whenever my prednisone dose got too low. I don't know why my rhematologist is so reluctant to stop Actemra. I haven't got answers to that question other than my rheumatologist doesn't want to rock the boat too much.

Whatever boat I am currently in, it is getting me to where I want to go. Things are going much better going by boat compared with trying to cross that prednisone bridge.

It has been smooth sailing so far on Actemra but I'm still not sure where the journey will end.

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