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Polymyalgia Rheumatica (PMR) | Last Active: Oct 22 8:17pm | Replies (52)

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@gmdb

I think treatment for PMR is evolving in the U.S.

Other autoimmune conditions, especially RA, are light-years ahead of PMR/GCA. I don't think PMR/GCA are unique in the realm of rheumatology so strict reliance on long term Prednisone is no longer mandatory and may not even be the norm anymore.

Prednisone is still the primary treatment for PMR initially. Needing Prednisone for 1-2 years isn't a complete myth in my opinion. Approximately half of newly diagnosed PMR patients are off Prednisone in less than 2 years. A good UK study says "40% of PMR patients are still treated after a median of 5.16 years."
https://pmc.ncbi.nlm.nih.gov/articles/PMC9113421/
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It is the "other half" of patients that are the concern. Universally, the vast majority of doctors don't want their patients on Prednisone for more than 2 years. At some point, methotrexate, leflunomide and other DMARDs are tried. These medications aren't intended to be a primary treatment for PMR but to reduce the amount of Prednisone that a patient needs.
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What is evolving in the U.S. is how long a doctor wants to leave a patient on Prednisone. I was left on Prednisone for 12 years. I tried all the DMARDs but I wasn't able to decrease my Prednisone dose significantly. When the request for authorization for me to receive Actemra was written, my rheumatologist included language that said, "Actemra represented my best hope of ever getting off Prednisone and all other treatment options had failed."
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I think patient driven requests to try a biologic sooner is driving some of it. Generally favorable research based response rates of biologics for treating PMR/GCA are allowing more and more doctors in the U.S. to switch to biologics a lot sooner than they used to.

The cost of a biologic is prohibited in many cases but it depends on a person's insurance rather than the government. The government (FDA) along with other insurance regulatory agencies have a big say in what the insurance companies are required to cover.

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Replies to "@gmdb I think treatment for PMR is evolving in the U.S. Other autoimmune conditions, especially RA,..."

@dadcue A very nice summary of where we are up to on treating PMR. And, yes, the treatment of RA is well ahead of that for PMR, In Australia only pred is actually approved for RA. But it is legal to try the RA treatments and see if they may work, possibly based on the idea that you may actually have elderly / late-onset RA. It isn't actually legal to prescribed the biologics unless you can prove the patient doesn't have PMR but sero-negative RA, or GCA.

So far over a 3 year period I've tried methotrexate from the start with pred. That lasted 18 months with ultimately very bad side effects and now the last 12 months on HCQ, Neither have been effective and I still flare badly and can't get below 12 mgs of pred. Next one on the list is leflunomide, but feeling pretty doubtful that will do any good.