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Kevzara (sarilumab) to treat PMR

Polymyalgia Rheumatica (PMR) | Last Active: Apr 4 7:55pm | Replies (156)

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@dadcue

That was hope my rheumatologist gave me too about Actemra. That was before Kevzara was FDA approved for PMR.

My rheumatologist encouraged me to give Actemra a try about 4 years ago. The nice part about Actemra was that, unlike prednisone, Actemra can be stopped easily. My rheumatololgist assured me that Actemra could be stopped if it didn't work or the side effects were too severe. I certainly have NOT had any serious infections since being on Actemra but infections are still possible.

I started feeling better when Actemra kept the inflammation in check instead of prednisone. PMR flares haven't happened as long as I continue Actemra. It would be nice to be able to stop Actemra sometime in the future.

I was just fortunate to be able to taper off prednisone after taking it for 12 years to treat PMR. My adrenals were not working well when my cortisol level was checked. I had to taper down to 3 mg of prednisone in order to have my cortisol level checked. It took about a year for my cortisol level to increase and I was able to stop prednisone.

Cortisol is the hormone that regulates inflammation. The prednisone we take replaces the cortisol that the adrenals produce. Too much or too little cortisol is detrimental to the body. There was no way of knowing how much prednisone I needed at any given time.

Prednisone is a poor substitute for the cortisol our bodies produce and more importantly, how our cortisol levels are regulated by the HPA axis. There was no way for me to regulate how much cortisol I needed with the precision that the HPA axis regulates cortisol.

https://www.verywellhealth.com/hypothalamic-pituitary-adrenal-hpa-axis-5222557
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I was taking ten other medications to treat prednisone related side effects. Cortisol is a hormone that regulates many other things besides inflammation.

https://my.clevelandclinic.org/health/articles/22187-cortisol

Prednisone was regulating inflammation because of PMR but it caused many other things to become unregulated. Being off prednisone has allowed me to stop six of the medications I was taking to control my blood pressure, cholesterol level and a few other things.

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Replies to "That was hope my rheumatologist gave me too about Actemra. That was before Kevzara was FDA..."

Thank you -- this is good info as to how cortisone works.