← Return to PMR - Decreased prednisone and pain returned

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@dadcue

Sorry to hear about the glioblastoma. I'm a retired neurosurgery nurse.

I don't think this concept is that controversial. I took prednisone for 12 years for "refractory PMR." Adrenal insufficiency was "discovered" only when I could maintain a prednisone dose of 3 mg. A simple a.m. cortisol level determined that adrenal insufficiency was likely so I was referred to an endocrinologist.

Long story ... but the only reason I could maintain a 3 mg dose of Prednisone was because I was started on a biologic medication called Actemra (tocilizumab). The endocrinologist said she was surprised that I had been on Prednisone so long. She wasn't optimistic that my cortisol level would ever improve. She said I might need to take Prednisone for the rest of my life.

I had to wait months for my cortisol level to improve but it did improve enough for my endocrinologist to say my cortisol level was "adequate." She said it "might be safe" to discontinue Prednisone but she wouldn't make any predictions about what would happen.

I discontinued Prednisone going from 3 mg to zero in about a week. Many things happened but not a PMR flare. I still do a monthly infusion of Actemra and haven't had any PMR relapses in 3 years. My quality of life has improved immensely since discontinuing Prednisone.

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Replies to "Sorry to hear about the glioblastoma. I'm a retired neurosurgery nurse. I don't think this concept..."

You are my hero. I have tried to offer my suggestions to many taking Actemra or Kevzra. I have done some research on both to understand. Actemra works on the IL-6 same as Kevzara but appears to have better results on GCA. I think many are confused that this also helps cortisol/steroid outcomes. Which it does if the inflammation is being caused by PMR. So it helps get you down to that 5mg range then the cortisol takes over. Most then are stuck taking both medications. I will look for that article.