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Any Tips For Tapering Off Prednisone?

Polymyalgia Rheumatica (PMR) | Last Active: Sep 5 9:44am | Replies (79)

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@dadcue

Sometimes I'm reluctant to say which biologic because tapering off prednisone wasn't simply a matter of switching to a biologic. In fact, my rheumatologist wasn't even sure which biologic might work the best for me.

Actemra, (tocilizumab) was what worked for me. My rheumatologist told me about research that was done with this biologic to treat GCA. The problem was my diagnosis was PMR without much evidence of GCA. My rheumatologist had to get authorization for me to get Actemra. The authorization request was approved with the understanding I would be treated "as if" I had GCA.

I had a good response to Actemra. I quickly tapered down to 3 mg of prednisone but I needed to stay on 3 mg of prednisone for a long time because of adrenal suppression. Much of the stuff about cortisol comes from an endocrinologist that I was referred to. She made me aware that some people are never able to taper off prednisone because of adrenal suppression. There was no guarantee that I would be able to taper off prednisone. For that matter, my rheumatologist didn't guarantee Actemra would work for PMR.

Actemra worked very well for me but not without some unexpected problems. I have more than one autoimmune disorder. This isn't uncommon. Sometimes people are misdiagnosed but many times people have more than one autoimmune condition.

My rheumatologist said Actemra might work for PMR but might not work for something else. Actemra was tried first and targeted PMR. Fortunately, Actemra seems to be working for my other autoimmune condition as well. However, my other condition did flare up as soon as I got off prednisone the first time. The fact that I got off prednisone at all was remarkable and it was something to build on.

This was all happening in 2019 when there was no biologic that was FDA approved for PMR. Now the FDA has approved a biologic for PMR that is called Kevzara (sarilumab). In theory, either Actemra or Kevzara might work for PMR except the research hasn't been done for Actemra to treat PMR. Actemra has only been FDA approved for the treatment of GCA.

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Replies to "Sometimes I'm reluctant to say which biologic because tapering off prednisone wasn't simply a matter of..."

Thanks so much for replying. I tapered down to 1mg. prednisone. Have felt absolutely terrible, So weak and tired. My rheumatologist wanted me to try infusions of (I guess is a biologic) called Symboni. My ins probably won't cover Actemra. After two infusions I can't tell any difference. Maybe worse. They say to wait and I have tried to. Now she wants me to go up to 3 mg of prednisone before I see her In Sept. My whole body ached and I have been miserable and ready to give up completely. I should add my primary thinks I have PMR. My rheumatologist insists I have RA. I know it is hard to diagnose. I had thought my cortisol would have kicked in at such a small amount of prednisone.