← Return to Transplant: Has anyone tapered off prednisone after decades of use?

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@marilynredder2367

I have been on prednisone for 10 years for polymyalgia rheumatica and then try and GCA. I am now on 7 mg for my adrenals. When I go below 7 I get pretty sick. It’s great to try but you have to be very careful adrenal insufficiency is dangerous.

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Replies to "I have been on prednisone for 10 years for polymyalgia rheumatica and then try and GCA...."

Hello @marilynredder2367 and welcome to Mayo Clinic Connect! Thank you for joining this discussion to share your experience with tapering off prednisone.

Can I ask how you have been monitoring your adrenal insufficiency throughout your process for new members like @lendalin @looperdolly and @tarmansbks to consider?

What kind of "pretty sick" do you experience if you don't mind sharing? Thank you.

I have also been on prednisone for three years for Polymyalgia Rheumatica. The side effects are horrible even though it is a wonder drug for PMR. I recently tapered off completely at the advice of my Mayo surgeon in preparation for an upcoming lumbar fusion surgery. I had my first surgery yesterday for nerve decompression.
Of course the PMR has flared again. I need strong bones for the second surgery and they don’t want me on prednisone as it weakens bones as a side effect. I am curious as to what side effects you have experienced in ten years from prednisone. My worst ones are weight gain, gastritis and severe sweating episodes. I have also been told it usually disappears in 1-4 years. I feel for you in suffering with it for 10. People just don’t understand how sick it makes one feel. Sadly, I believe the medical professionals really don’t understand the disease nor truly know how to help us.

Hello and welcome to Mayo Clinic Connect, @marilynredder2367. Thank you for sharing your prednisone history and experience with the group.

Can I ask if you were on a guided taper to the point where you are now, at 7mgs?