← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

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@bonnie123

Has any one tried actemra for pmr? What did you think about it and what was the cost?

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Replies to "Has any one tried actemra for pmr? What did you think about it and what was..."

Hi @bonnie123, Welcome to Connect. There are a couple of other discussions on Actemra you might find helpful:

--- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
--- How hard is it to get on Actemra (Tocilizumab) with PMR?: https://connect.mayoclinic.org/discussion/how-hard-is-it-to-get-on-actemra-tocilizumab-with-pmr/.

Has your doctor or rheumatologist suggested treatment with Actemra (Tocilizumab)?

I also belong to a group in the UK and they are hard pressed to get Actemra for GCA. I don't think they can get it for PMR. I believe if their Dr. says they have RA, they can get it. I'm not sure about here in the States but this is a good place to find out.
I've been taking it since October 2019 and it finally enabled me to taper my prednisone, although my case was misdiagnosed for about nine months...so it got a running start. One month, 4 injections costs about $5000....don't faint! I only pay $45.00 for the first month of the year and then 'extra help' kicks in. I pay nothing after that. I think it falls under 'catastrophic illness'...though I don't feel catastrophic. I'm 82, and have Medicare Advantage through Blue Cross/Blue Shield.
I hope that at least helps.💞

I received Actemra for PMR 4 years ago.. Actemra was requested and approved. Actemra works very well for me. I have had minimal side effects and was able to taper off prednisone relatively quickly. My rheumatologist now thinks PMR might be in remission but I'm still taking Actemra.

I have other autoimmune disorders but not GCA. Actemra isn't FDA approved for any of my autoimmune disorders. My rheumatologist needed to get authorization first before he could prescribe Actemra to me to treat PMR. Some of the issues he addressed in the request for approval are as follows.

1) I was on prednisone for more than 12 years for the treatment of PMR which was diagnosed when I was 52 years old. I was unable to taper off prednisone.

2) Other medications such as methotrexate and leflunomide were tried and were either not effective or not tolerated.

3) PMR remained refractory on moderately high doses of prednisone.

My rheumatologist told me that I was "too young" (64 years old) to take prednisone for the rest of my life. I asked another rheumatologist what he thought about the odds of Actemra being approved. His reply was that it was "unlikely" and "don't count on it."

Actemra was approved based on my medical history. The recommendations from the doctors who approved Actemra were the following:

"Patient meets inclusion criteria for tocilizumab in Giant Cell Arteritis (GCA), most notably the inability to taper steroids. As per phone conversation with Dr. ____, it is believed that PMR is mediated by IL-6 mimicking GCA. PMR therefore would seem most likely to respond to IL-6 blockade with Tocilizumab.

Request for Actemra (tocilizumb) is approved for use pending appropriate labs have been obtained and met. Dosage and administration of Tocilizumab should follow recommendations for treatment for GCA."

There is another biologic medication that works like Actemra. This other biologic is called Kevzara (sarilumab). It has recently been FDA approved for the treatment of PMR. It might be easier to get Kevzara prescribed for PMR.

https://www.pharmacytimes.com/view/fda-approves-sarilumab-for-adults-with-polymyalgia-rheumatica