Methotrexate / Actemra

I was diagnosed with PMR and GCA in 2017. Was on 80mg of Pred for 8 months then switched to self inject Actemra. Never really had any side effects from Actemra but it did very much concern me about getting cancer. I finally came off Actemra in Nov 2021 and been off since. So far so good....

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I just started Actemra last week …am very excited to see if it helps as methotrexate sulfasalazine and hydroxyquine aren’t stopping anything without prednisone…seems under 5 mg just causes big relapses …hope the Actemra will get me pain free and off prednisone

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It is interesting that you are off prednisone and your doctor is considering starting Actemra. I started Actemra 4 years ago for PMR. Part of the criteria for getting Actemra approved for me was an inability to taper off prednisone. Another criteria was the failure of suitable alternatives such as Methotrexate. My rheumatologist listed other alternatives that were tried and also failed. He said there were no other suitable alternatives that existed and Actemra was my best chance of ever getting off prednisone.

I had a great response to Actemra and it did allow me to taper off prednisone. My regret was that Actemra wasn't tried sooner because I took prednisone along with other steroid sparing medications for 12 years to treat PMR. Trying Actemra sooner rather than later is fine with me.

I would encourage you to try Actemra if your doctor thinks it is warranted. I remember people discouraging me from trying Actemra even though they had no personal experience with Actemra. I never would have been able to taper off prednisone had I listened. Taking prednisone for the rest of my life wasn't what I wanted.

I appreciated people who shared both positive and negative opinions based on their own personal experience.

If it helps you to decide ---my experience with Actemra has been positive. I'm sure there are other people who have negative experiences with Actemra. I can appreciate their negative experience with Actemra because Methotrexate was mostly a bad experience for me.

Just so you know ... Actemra isn't FDA approved for the treatment of PMR. However, Actemra is FDA approved for GCA.

A similar biologic called Kevzara is FDA approved for PMR.
https://investor.regeneron.com/news-releases/news-release-details/kevzarar-sarilumab-approved-fda-first-and-only-biologic#:~:text=(NASDAQ%3A%20REGN)%20and%20Sanofi,corticosteroids%20or%20who%20cannot%20tolerate

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It is interesting that you are off prednisone and your doctor is considering starting Actemra. I started Actemra 4 years ago for PMR. Part of the criteria for getting Actemra approved for me was an inability to taper off prednisone. Another criteria was the failure of suitable alternatives such as Methotrexate. My rheumatologist listed other alternatives that were tried and also failed. He said there were no other suitable alternatives that existed and Actemra was my best chance of ever getting off prednisone.

I had a great response to Actemra and it did allow me to taper off prednisone. My regret was that Actemra wasn't tried sooner because I took prednisone along with other steroid sparing medications for 12 years to treat PMR. Trying Actemra sooner rather than later is fine with me.

I would encourage you to try Actemra if your doctor thinks it is warranted. I remember people discouraging me from trying Actemra even though they had no personal experience with Actemra. I never would have been able to taper off prednisone had I listened. Taking prednisone for the rest of my life wasn't what I wanted.

I appreciated people who shared both positive and negative opinions based on their own personal experience.

If it helps you to decide ---my experience with Actemra has been positive. I'm sure there are other people who have negative experiences with Actemra. I can appreciate their negative experience with Actemra because Methotrexate was mostly a bad experience for me.

Just so you know ... Actemra isn't FDA approved for the treatment of PMR. However, Actemra is FDA approved for GCA.

A similar biologic called Kevzara is FDA approved for PMR.
https://investor.regeneron.com/news-releases/news-release-details/kevzarar-sarilumab-approved-fda-first-and-only-biologic#:~:text=(NASDAQ%3A%20REGN)%20and%20Sanofi,corticosteroids%20or%20who%20cannot%20tolerate

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Are you taking the Actemra by injection or IV?
Looking forward to see how the Actemra works for you.
Praying you have great results!

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I appreciate you sharing about your experience with Actemra. I am assuming because the plaquenial hasn’t done much for the PMR and I am having side effects from the methotrexate she is considering my trying Actemra .

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