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GCA Biopsy while on prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Oct 22, 2023 | Replies (14)

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@dbyrne

Yes you are right, it’s 162 mg. How are infusions working out for you?

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Replies to "Yes you are right, it’s 162 mg. How are infusions working out for you?"

I'm very happy with the Actemra infusion.

I "progressed" to a monthly infusion. I started with an Actemra injection every 2 weeks. I was able to taper off prednisone but it took me an entire year the first time to get to zero prednisone. I was only off prednisone for about a week before something else happened. I had to go back on 60 mg of prednisone again.

It was only a temporary setback but Actemra was stopped for 3 months while a different biologic was tried. Ultimately, I was switched back to Actemra except I did weekly injections instead of every two weeks. I tapered off prednisone in two months the second time.

I have taken Actemra a total of 4 years except for a period of time when Actemra wasn't available during Covid. Actemra supplies were being diverted to treat seriously ill Covid patients so that was good. However, I had a relapse and needed prednisone again.

When supplies of Actemra improved, I was given an infusion of Actemra. I had a great response to the Actemra infusion. I was off prednisone for the third time before I was given my second infusion of Actemra.

A decision was made to let me stay on a monthly infusion. My rheumatologist has more control over what dose of Actemra I get. All I do is show up for the infusion every four weeks although sometimes I go five weeks between infusions.

The infusion works extremely well for me. Someday I hope to be able to stop Actemra but my rheumatologist doesn't think it would be a good idea.