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

Posted by looperdolly @looperdolly, Jul 9, 2021

Here goes…I have recently surpassed my 30 year kidney transplant anniversary. An amazing milestone for me. Last month I called a meeting with my care team to discuss how to better fine-tune and manage transplant medications to take into account my whole-body health for the next 30 years. Long story short, the side effects from long term (3 decades) prednisone use are at the forefront of many of my health setbacks. Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? My care team is working with me to gradually taper off prednisone completely. It sure would be assuring to know if anyone has gone before me on such an endeavor. Will my body really learn to make cortisol on it's own again? Thank you for reading my post. I really appreciate it!

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I hope someone has an answer. I have been on medrol for 14 years and would like to get off even though I know I will likely suffer pain in the joints. I understand the body depends on it for cortisol and can it make it on its own?

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I have Chrohns Disease and was on prednisone for many years. I tapered off very slowly under the supervis ion of my Gastroenterologist. I am still on a biological called remicade and the medication imuran. I am doing as well as can be expected. I am thrilled to be off prednisone as it played havoc with my bones.

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@lendalin

I have Chrohns Disease and was on prednisone for many years. I tapered off very slowly under the supervis ion of my Gastroenterologist. I am still on a biological called remicade and the medication imuran. I am doing as well as can be expected. I am thrilled to be off prednisone as it played havoc with my bones.

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Thank you for your reply @lendalin . During your taper off prednisone, did you test and monitor for cortisol levels? And did your adrenal glands "wake up" to start producing the cortisol naturally? Would you be willing to share the taper schedule that you followed?

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@guidant07 I saw on another group that you too are a long time kidney transplant survivor (1981). Mine was in 1990. Thought I would bring your attention to this thread. Any wisdom to share on how to taper off, or manage well while continuing with prednisone for decades? My meds were Cyclosporine + Prednisone for the first ~ 15 years, and then MMF + Prednisone for the next 15 years. My care team and I are considering MMF only for the next 30 years 🙂

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@looperdolly

Thank you for your reply @lendalin . During your taper off prednisone, did you test and monitor for cortisol levels? And did your adrenal glands "wake up" to start producing the cortisol naturally? Would you be willing to share the taper schedule that you followed?

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No I did none of those things.

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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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I meant to write "cortisol" not cortisone. Can't figure out how to edit my original post though…

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@looperdolly

I meant to write "cortisol" not cortisone. Can't figure out how to edit my original post though…

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@looperdolly I have updated your original post to read "cortisol" instead.

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@looperdolly

@guidant07 I saw on another group that you too are a long time kidney transplant survivor (1981). Mine was in 1990. Thought I would bring your attention to this thread. Any wisdom to share on how to taper off, or manage well while continuing with prednisone for decades? My meds were Cyclosporine + Prednisone for the first ~ 15 years, and then MMF + Prednisone for the next 15 years. My care team and I are considering MMF only for the next 30 years 🙂

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Have had many serious conversations with my transplant team about discontinuing the Prednisone. It always came down to is it worth risking losing the kidney. I am 40 Rd into the transplant of my dad's kidney which is now 92 yrs old. ,(Dad passed in 2007) i am 69 yrs old. I on 5 mg/ day and am in good health. What would you do,? The only other drug i am on is inmuran. Mayo has very little data on effects of discontinuing Prednisone with transplant patients so I will continue.

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@tarmansbks

I hope someone has an answer. I have been on medrol for 14 years and would like to get off even though I know I will likely suffer pain in the joints. I understand the body depends on it for cortisol and can it make it on its own?

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Hello @tarmansbks and welcome to Mayo Clinic Connect. I believe you were asking if your body can produce cortisol on its own after tapering off your Rx. I found some information on that topic below that you might find of interest. Notably, the article does state the importance of a slow taper. "A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function."

– Prednisone Withdrawal:
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
Have you consulted with your doctor about this desire? Why are you interested in tapering?

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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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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?

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@guidant07

Have had many serious conversations with my transplant team about discontinuing the Prednisone. It always came down to is it worth risking losing the kidney. I am 40 Rd into the transplant of my dad's kidney which is now 92 yrs old. ,(Dad passed in 2007) i am 69 yrs old. I on 5 mg/ day and am in good health. What would you do,? The only other drug i am on is inmuran. Mayo has very little data on effects of discontinuing Prednisone with transplant patients so I will continue.

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@guidant07 I congratulate you and @looperdolly both! My husband is a kidney recipient, a "baby" next to you at 5 years out from transplant. He is on 2.5mg per day of prednisone. Hardly a dose at all. He has been following this discussion closely, as he woud love to wean off any meds he can!
Gingert

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