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Polymyalgia Rheumatica (PMR) | Last Active: Feb 19 4:35am | Replies (84)
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It was stressful for me waiting to see if the insurance company would approve the Actemra, but I wasn't involved in any way with the process. My rheumatologist prescribed it and maybe provided justification, and after a couple of days the insurance company approved it. The reduction in the Part D cap from $8000 out of pocket max to $2000 this year helped a lot.
I never feel much difference from the Actemra injections. On the day of the injection I usually feel some really minor abdominal pains or sensations, and sometimes I feel a little tired the next day. But I know it's working since I've been able to taper the prednisone fairly rapidly with no issues.
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In my experience the drug companies found a way around the $2000 out of pocket maximum. I have Medicare part D and no part D plan in my county would cover Kevzara. My estimated out of pocket cost for 2025 was $63,000. I called Medicare and my Part D insurer and they told me to have my doctor send in a Rx. He did that and the insurance company called and said my revised cost was $16,000. It appears that by saying they don't cover it they can pretty much charge what they want! Medicare told me that if a drug isn't covered the out of pocket maximum does not apply. I am off Kevzara mainly due to cost but it also wasn't allowing me to taper below 5 mg prednisone. It also raised my LDL cholesterol 50 points, from around the upper limit of normal at 130 to 180! My doctor advised that I start a statin. No thanks! Hopefully the cholesterol will come back down.