Connect
← Return to How hard is it to get on Actemra (Tocilizumab) with PMR?
Discussion
How hard is it to get on Actemra (Tocilizumab) with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 2, 2023 | Replies (51)Comment receiving replies
To follow-up, my Kaiser rheumatologist had absolutely no problem prescribing tocilizumab despite the fact that he is uncertain if I have GCA.
He feels the diagnosis of PMR is quite certain., and that seems to be enough for him.
The question of payment is a not as clear. There is a program that reduces the "co-pay" to near $0 offered by the Genetech, the corporation that makes tocilizumab. To receive those funds, Genentech's web page states that the use must be for an FDA-approved "indication". Since PMR is not yet approved, an diagnosis of GCA or one of the other approved indications is needed.
I may be on my own for the co-pays unless I can get my doctor to at least say I have symptoms "consistent" with GCA.
Genentech says that elevated CRP and ESR are enough for them to believe the diagnosis. I have both of those. It's just that actual GCA is unclear to my rheumatologist...
Replies to "To follow-up, my Kaiser rheumatologist had absolutely no problem prescribing tocilizumab despite the fact that he..."
Connect
I wouldn't think Genetech would care about the diagnosis as long as a doctor thinks Actemra is indicated and prescribes it. Insurance companies and/or governments are the ones who don't want to pay for expensive medications that aren't FDA approved for the diagnosis being treated.
I can understand an insurance company's reasoning and it is stipulated in almost all insurance contracts which someone agrees to. If your employer provides you with a health insurance benefit, then it is your employer who agrees.
Believe it or not, prednisone isn't FDA approved for PMR but prednisone is cheap and nobody cares about the cost! Historically, prednisone was used to treat PMR and it worked or at least prednisone "managed the symptoms" of PMR. There isn't much evidence that prednisone helps to "achieve remission" because it is believed that PMR "burns itself out" when you wait long enough. However, there is an abundance of medical evidence that "long term" treatment with prednisone comes with serious side effects.
My personal reasoning is that anti inflammatory medications treat inflammation regardless of the diagnosis. Nobody wants my opinion anyway and I don't have any authority to make the decision. I can only say Actemra worked for me and the diagnosis being treated was PMR.
Your inflammatory markers confirm that you have an inflammation problem but not what is causing the inflammation. Granted, doctors should know the diagnosis they are attempting to treat but a correct diagnosis is sometimes nothing more than an educated guess. If your inflammation is being caused by an infection, for example, then Actemra isn't indicated.
Good luck getting Actemra approved. My rheumatologist used the argument that PMR is thought to be caused by the same inflammation mechanism as GCA. Since Actemra was FDA approved for GCA, he thought it was likely that PMR would also respond to treatment with Actemra. My approval was made internally at the VA so it didn't need insurance approval.
Otherwise, KEVZARA (sarilumab) is now approved for PMR and it should work the same way as Actemra works. I don't think Genetech wants to lose the PMR market to another company so I would guess they will fund the research needed to get Actemra approved.