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How hard is it to get on Actemra (Tocilizumab) with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 2, 2023 | Replies (51)Comment receiving replies
Thanks for these comments.
My insurer and medical provider are the same entity, Kaiser Permanente. Getting info out of them on costs has been difficult.
The earlier data I posted was based on what I could get from Kaiser's on-line tools. This is supposed to have cognizance of my specific coverage. It showed that Kaiser would pay $0 toward Actemra
My rheumatologist has done further research with the Kaiser pharmacists, and they say that this is untrue. They say Kaiser does provide some coverage.
According to them, Kaiser does make substantial payments, so that my cost BEFORE any subsidy from Genentech would be about $3900 for 6 months of weekly injections of Actemra.
Since Genentech corporate subsidy will cover up to $15,000/year, that leaves me no cost... it will nice if this is true.
You wrote "Imaging while you are taking prednisone won't show the inflammation because it is "hidden" by prednisone."
That's what I thought too, but my rheumatologist differed. He says the inflamed arteries of GCA are still visible for months after taking Prednisone...but again, the research papers I had seen said the visibility was reduced much more quickly, like in 3-10 days. My rheumatologist says that is true for PMR, but not GCA. Perhaps the GCA damage is more permanent?
Replies to "Thanks for these comments. My insurer and medical provider are the same entity, Kaiser Permanente. Getting..."
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I don't really "know" that prednisone hides the inflammation. but that is what gets repeated often. It becomes very difficult to separate fact from fiction.
Inflammation by its very nature is difficult to see at the cellular level. Imagining techniques improve as technology improves. Maybe it is possible to diagnosis these things while taking prednisone. When I was diagnosed, my rheumatologist wanted to see me when I wasn't taking prednisone.
I'm not very familiar with Kaiser Permanente. I have an idea of how they work. It is probably to your advantage that your insurer and healthcare provider are the same entity as long as you like their network of healthcare providers. These networks and alliances get complicated but can be advantageous.
I'm retired now but when I worked, my employer, health insurance and healthcare provider were all the same. The insurance company was a different entity but the hospital was "self insured" meaning that the insurance company only administered the medical claims for the hospital. The hospital paid the claims and heath insurance was provided "free" to all employees.
The insurance company might deny a medical claim but as an employee at the hospital I could talk to my employer to see if they would overrule the insurance company. My healthcare network was my employer who had an interest in keeping me healthy and happy. As long as the hospital provided my healthcare services, the hospital was very generous.
It sounds like you are making some progress. These reimbursement issues are one thing but when it is all said and done, I just hope Actemra works as well for you as it did for me. I don't want to get your hopes up too much.
Has inflammatory arthritis been ruled out? Don't forget that having two types of autoimmune problems is possible. That was my problem with inflammatory arthritis and PMR. There was also a problem with uveitis. Uveitis is associated with certain types of inflammatory arthritis but it is possible for it to be a standalone autoimmune problem. With your inflammatory markers being so high, my guess is you have more than one thing going on.
Uveitis was out of my rheumatologist's league. I once showed up to a rheumatology appointment with a red eye. My rheumatologist just looked at my eye and asked me if I knew how serious it could be. She called down to the ophthalmology department herself and wouldn't see me until I saw an ophthalmologist first.
Getting off prednisone will be a challenge the longer you take it. It isn't a benign medication. Prednisone is best used as a bridge to something else that works better and hopefully something else will have fewer side effects. Prednisone is not a good medication to take in high doses and for a long time.