1. < Polymyalgia Rheumatica (PMR)

Infusion vs injection of tocilizumab (Actmera)

Posted by pdxmac @pdxmac, Jul 8 12:20pm

My rheumatologist has prescribed this to help me taper after nearly 2 years of steroids for PMR. She says I can choose an infusion every 4 weeks or an injection (which I assume I administer myself) every 1 to 2 weeks. Which should I choose?

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Mike | @dadcue | 1 day ago
In reply to @hoosierlarry "The more I read the more confused I get. So far, my local RA doctor wants..." + (show)
@hoosierlarry

The more I read the more confused I get. So far, my local RA doctor wants to treat my GCA ( diagnosed in May 2025) with Acterma starting in mid August. By that time I will be down to 7.5 mg of Prednisone ( started at 40mg) .
But the tests that the Mayo Clinic doctor just sent me for before my appointment there in 7/29 appear to me that I might possibly have more than just GCA.
I’m thinking of pushing this start date back to see how low I can get on Prednisone alone before adding anything ?
Knowing no one’s body reacts the same makes it all almost a guessing game what to do
Am I crazy ???

Jump to this post

No ... I don't think you are crazy. I wouldn't call it a guessing game for what might work for you either. What other conditions might you have according to Mayo?

Actemra worked well for me to treat PMR. When I asked my rheumatologist before starting Actemra if he was certain Actemra would work? He said, "No guarantee that Actemra would work but I would need to try Actemra to see if it worked or not."

Afterwards ... when Actemra worked I asked my rheumatologist how he knew Actemra would work? He said, "It was an educated guess but he didn't know."
---------------------------
I don't know what you should do. My rheumatologist needed to submit an authorization request to get Actemra approved for me. In the request that was submitted there was a discussion about my inability to taper off Prednisone and that all other alternatives had failed. The conclusion was that Actemra offered me my "best chance" of ever getting off Prednisone.

After all my medical records were reviewed --- The request was approved by a committee of doctors and a pharmacist. The committee offered their recommendations as well.

I was treated with Prednisone for 12 years. Other DMARD medications like methotrexate and leflunomide were tried and countless other medications for nerve pain and other conditions which mostly were caused by Prednisone side effects.

Now I only take Actemra. Most of my other medications were stopped within a couple of years after Prednisone was discontinued.

REPLY
1 reply
mo2025 | @mo2025 | 17 hours ago
In reply to @mo2025 "Yes, my psoriasis which had been dormant for about 5 years resurfaced. Hence the move to..." + (show)
@mo2025

Yes, my psoriasis which had been dormant for about 5 years resurfaced. Hence the move to Infliximab which isn't particularly effective for PMR. So, I'm hoping my rheumatologist can prescribe another biologic because there's no way I'm going back on Prednisone

Jump to this post

Thanks Mike, I find that the Infliximab isn't working too well for me. I had a resurgence of joint pain so my rheumatologist additionally prescribed Arcoxia (90 mg) as a supplement and Pantoprazole Teva Pharma (40 mg) gastro-resistant tablets but the psoriasis is still at bay. I'm curious to see what she can suggest at my next appointment as the Arcoxia was to be a temporary measure but I tried reducing it to every second day and the pain and stillness came back immediately so had to revert to it again.

REPLY
hoosierlarry | @hoosierlarry | 12 hours ago
In reply to @dadcue "No ... I don't think you are crazy. I wouldn't call it a guessing game for..." + (show)
@dadcue

No ... I don't think you are crazy. I wouldn't call it a guessing game for what might work for you either. What other conditions might you have according to Mayo?

Actemra worked well for me to treat PMR. When I asked my rheumatologist before starting Actemra if he was certain Actemra would work? He said, "No guarantee that Actemra would work but I would need to try Actemra to see if it worked or not."

Afterwards ... when Actemra worked I asked my rheumatologist how he knew Actemra would work? He said, "It was an educated guess but he didn't know."
---------------------------
I don't know what you should do. My rheumatologist needed to submit an authorization request to get Actemra approved for me. In the request that was submitted there was a discussion about my inability to taper off Prednisone and that all other alternatives had failed. The conclusion was that Actemra offered me my "best chance" of ever getting off Prednisone.

After all my medical records were reviewed --- The request was approved by a committee of doctors and a pharmacist. The committee offered their recommendations as well.

I was treated with Prednisone for 12 years. Other DMARD medications like methotrexate and leflunomide were tried and countless other medications for nerve pain and other conditions which mostly were caused by Prednisone side effects.

Now I only take Actemra. Most of my other medications were stopped within a couple of years after Prednisone was discontinued.

Jump to this post

Thanks for the info. I have a lot of questions for the RA doctor at Mayo Clinic on the 29th. I originally thought no one stayed on Prednisone for as long as you for that long without bad results. As my dose came down to where it is now it is not having much negative reaction. The Mayo doctors had me do ten different blood and urine tests for this appointment. At this point I am not sure if GCA is the only autoimmunity ailment I have and I think the lower I get on the Prednisone if there is something else it will surface. I want to know that before I start Acterma if possible.
Started on 10 mg, going to 7.5 mg in three weeks.
I appreciate hearing of the experiences of others on this journey.

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