Here's my understanding of what I will be dealing with in terms of the payment schemes for Actemra and Kevzara.
My employer-paid medical plan at Kaiser Permanente covers NONE of the cost for either. Both are expensive. However, the pharmaceutical corporations substantially offset costs. Costs as Kaiser pharmacy:
Actemra weekly injections = $1070.91/month
Kevzara weekly injections = $3931.03/month
The pharmaceutical corporations, Genentech (for Actemra) and Sanofi US Regeneron Pharmaceuticals (for Kevzara), are both offering up to $15,000/year of the drugs for near $0.
This can reduce my out of pocket substantially; for Actemra it would be near $0. For Kevzara, the $15,000 will cover just under 4 months of treatment, then I would be on my own for the $3931.02/month...
Genentech requires paperwork showing a doctor prescription for Actemra to treat GCA (not PMR - Actemra is not FDA approved for PMR yet, and that is one to the stipulations). Perhaps surprisingly, their required justification for diagnosis for GCA does not requires a biopsy, but merely raised CRP and ESR. I have both of these in spades.
Sanofi requires paperwork showing a doctor prescription for Kevzara to treat PMR.
My next step is to get my rheumatologist to write a prescription. He's generally very easy to deal with, and collaborative, but in out last conversation, he was skeptical about a GCA diagnosis, although not PMR.
I'm not sure how these opinions will affect his prescription writing.
Will he still write a prescription for Actemra based on a diagnosis for GCA that I can show Genentech to receive their payments? I hope so.
Otherwise, I will probably go with Kevzara. My rheumatologist believes both are similarly effective, although my review of the results showed that Actemra looked better in terms of "adverse events".
The underlying cause of my rather severe inflammation is unclear, and it will always be guesswork - based mainly on imaging, blood markers, and my reported symptoms.
It is most likely some combination of PMR and non-cranial GCA. PMR is a very strong candidate, albeit with a few anomalies
- bilateral shoulder and pain BUT NO stiffness
- headache behind my eyes
- double vision
- limb claudication (pain) far removed from joints
- unheard of levels of inflammation for PMR - 1/250,000 levels).
GCA only indicated by blood markers and a few of my symptoms. MRI imaging of my head and a full-body PET/CT scan of my body did NOT detect the enlarged arteries of GCA. However the imaging was done after weeks to months of prednisone treatment, which is reported to reduce imaging's ability to see GCA.
CORRECTION: I will probably go with Actemra in either case. Unless tapering is successful in less than about 5 months, my out of pocket costs will be less with Actemra. Kevzara gets very expensive quickly once the $15,000 corporate offset is exhausted after 3.8 months.
(editing was ended before I completed the previous long dissertational comment)