← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

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@dadcue

After 3-4 months on Actemra, my prednisone taper came to an abrupt halt when I reached 3 mg of prednisone. I was told that I shouldn't taper any lower than 3 mg until my cortisol level increased. I waited six months for my cortisol level to improve while staying on 3 mg of Prednisone.

The shocker was when my endocrinologist said 3 mg of prednisone was such a low dose that I didn't need to taper. Stopping prednisone was contingent on having an "adequate cortisol level" more than causing a flare of PMR.

I didn't have a PMR flare as long as I stayed on Actemra. I didn't feel well on 3 mg prednisone but for the first time I was able to distinguish symptoms of PMR from adrenal insufficiency. However, I was never certain that PMR was under control until Prednisone was completely stopped.

It made sense to me that Prednisone replaced cortisol at the start of PMR. Until cortisol replaced Prednisone again, I wouldn't be able to stop Prednisone.

For everything to happen, Actemra had to replace prednisone. My cortisol level wasn't going to improve until I could maintain a low dose of prednisone.

What hasn't happened yet is being able to stop Actemra so that PMR stays in remission. At least I got to zero prednisone after 12 years. My rheumatologist insists it is better to be on Actemra instead of Prednisone.

I just wish that Actemra had been tried sooner rather than later.

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Replies to "After 3-4 months on Actemra, my prednisone taper came to an abrupt halt when I reached..."

The rheumatologist wants to start me on methotrexate but I also have epidermolysis bullosa simplex and have always had trouble with my skin; considering that skin issues are a major side effect of methotrexate I don't think he's being particularly very responsible with that recommendation. Here in Canada, biologics are not necessarily always approved for payment by our medical system. I suspect I will have to work hard to convince this doc to advocate for me.
THank you so much for your input here it really helps! It's good to hear yor story.

Thank you. Your summary here is very helpful to me as I just did my third injection of Actemra. No issues so far and I’m at 4 mg prednisone. I like the adequate cortisol level comment. Gives me a guideline and possible timeline of my next year. 👍🏻☺️