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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.

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Replies to "Hello All -- the official publication of the ACR is the "Rheumatologist" and has very recent..."

@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.