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How hard is it to get on Actemra (Tocilizumab) with PMR?

Posted by redboat @redboat, Mar 20, 2023

Has anyone had experience with getting their doctors to prescribe, AND their insurance to pay for, Actemra (Tocilizumab) when they "only" have PMR?

Some background: It seems I have PMR or Giant Cell Arteritis (GCA) or both. It started on Jan 14, 2023. A PET scan soon should help clarify the situation. My "presentation" is extraordinarily severe, and I'm currently on 60 mg of prednisone.

In either case, based on the studies I've seen, Actemra (Tocilizumab) helps in tapering off prednisone. This is both in terms of reducing the risk of relapse and adverse events.

However, I understand Actemra is only approved by the FDA for Giant Cell Arteritis. And I read Actemra is quite expensive.

It may turn out I "only" have PMR. In that case, officially to get Actemra , it would have to be an "off-label" prescription. Has anyone had experience with getting their doctors to prescribe, AND their insurance to pay for, Actemra when they "only" have PMR?

My medical provider is the HMO Kaiser Permanente...

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | Apr 2, 2023
In reply to @redboat "The doctor has given me a 6 month tapering schedule with the weekly injections of Actemra...." + (show)
@redboat

The doctor has given me a 6 month tapering schedule with the weekly injections of Actemra.

I am at 60 mg/day of Prednisone now, so the tapering starts fast at first, but is very slow once I reach 10 mg, where in theory, if there are no relapses, I will be in 2 months.

We'll see if that happens, I realize a 10 mg dosage 2 months from now, down form 60 mg now, sounds crazily fast.

I'm pretty sure my adrenal glands completely shut off after about 1 month of 20 mg/day of Prednisone dosage. This is based on the way my inflammation markers actually ROSE during the period, as the adrenals slowly shut down when they sensed adequate cortisol was in my system, due to the Prednisone I was ingesting. My total cortisol levels slowly dropped as they slowly shut down and my inflammation went up. The Prednisone then had to be increased to contain the inflammation.

The NEJM trials of Actemra against GCA- see attached graph - used a 6 month taper with an 80% success rate for those taking weekly injections of Actemra.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849

Maybe I'll be one of the lucky ones, but I'm aware I may not be, and there are dangers to underdosing.

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I believe this study only included "newly diagnosed" people so it would not apply to me. I took prednisone for more than 12 years for PMR and other problems. After I got off prednisone, an endocrinologist found an array of hormone imbalances.

I don't think going form 60 mg to 10 mg is crazy fast for you as long as Actemra has started to work. You are "relatively" newly diagnosed. so the study is more pertinent to you. Hopefully, the long term side effects of prednisone haven't taken hold.

So much of this just depends on the inflammation pathway that is being targeted. IL-6 is targeted for PMR/GCA. Many times a different cytokine is targeted for RA and other types of inflammatory arthritis. TNF-inhibitors seem to work better for the various types of inflammatory arthritis.

I ended up trying both Actemra (IL-6) and Humira (TNF) and my rheumatologist told me to pick the one that worked best for me. I decided that Actemra worked better for me.

Someone else may discover that a TNF-inhibitor may work better for them. These cytokines have a way of communicating with each other. They are more like a network of cytokines. Targeting one pathway doesn't always result in complete remission.

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