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DiscussionKevzara (sarilumab) to treat PMR
Polymyalgia Rheumatica (PMR) | Last Active: Aug 24 6:34am | Replies (162)Comment receiving replies
Replies to "That's the hope my doctor gave me re Kevzara, that he can wean me off prednisone,..."
@paulagcl and. @dadcue -- Please look at the slides in PMRandIl6.com - https://www.pmrandil6.com/resources/. scroll down to find the videos
The two biologicals tocilizumab and sarilumab are anti-IL6-receptor antibodies . this site is from sanofi /regeneron and is not an advertisement* for Kevzara (sarilumab)!- . there are two videos - nicely done for lay people .
* that said - the video about the contraindications of Prednisone is practically an advertisement for wanting to try sarilumab !! : )
The American college of Rheumatology Meeting is in Nov- it will be interesting to see what abstracts there are for PMR and who might be doing (more) basic research about the immune-cell pathways.
In 2022 this paper was published about GCA -- Fig 3 shows what tocilizumab is blocking.
Review
New Insights into the Pathogenesis of Giant Cell Arteritis: Mechanisms Involved in Maintaining Vascular Inflammation
In 2022 - this paper review was published about PMR - i really like the Lunberg fig with the shoulder girdle ! An update on polymyalgia rheumatica
Ingrid E. Lundberg. J Intern Med. 2022;292:717–732
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.