← Return to 2nd withdrawal of prednisone after initial Steroid avoidance protocol

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@rosemarya

Hi, @jullieh. I am extending a virtual handshake to welcome you to Mayo Connect. I am happy to hear that have received a kidney transplant and are on the road to your new normal!
In 2009, I received a liver and kidney at Mayo in Rochester. Like you, I was tapered off the high post surgery dose of prednisone in a matter of weeks. However I continued to take a daily 10 mg prednisone pill for around 5 years because the research (at that time) and my health called for it. My labs, and other immunosuppressant medications were relatively stable throughout those years. Then, at one of my annual visits to Mayo, my transplant team said that I could get of the prednisone. I would not have expected 10 mg to be a difficult amount to withdraw from. I had some bothersome side effects and needed some of my other meds adjusted along the way. My primary care doctor who is nearby helped me with my taper. I have been off prednisone for probably 5 years now.

Like, you, I am at a distance from my transplant team – 756 miles to be exact from my home in Kentucky to Rochester MN. I return annually for my checkups, and all other care is provided under the guidance of my primary care doctor, who is willing to coordinate with Mayo. I continue to have my routine labs drawn per my schedule, and both my primary care doctor and Mayo get the results. Here is an article that you might like to read. Transplant Physicians and Local Physicians: A Partnership to Provide Best Care to Every Patient
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-physicians-and-local-physicians-a-partnership-to-provide-best-care-to-every-patient/
@jullieh, Have you asked your doctors their reasons for and against continuing the prednisone? It is always okay to find out the benefits or risks involved.

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Replies to "Hi, @jullieh. I am extending a virtual handshake to welcome you to Mayo Connect. I am..."

Thank you for the link and your story, that is helpful! Mayo said i could try to go at and said "we will see how it goes." he said there is not a lot of data regarding being off prednisone then back on, and then how successful it is getting off again during the first year. In theory i still have some of my induction agent in my system until around 12 months, so that could still have some protection against rejection. My Vegas Nephrologist said that when he was at John's Hopkins for his training they found that the steroid withdrawal was causing increased rejection. They were using a different induction agent than i had though. They chose this induction agent on purpose to be able to get me off the steroid. I think that because of the off, on, and now possible off again situation, they just can't say how much of an increase I risk of rejection I have, because it had not been studied. So they each have their own ideas and previous patient experiences that they base their recommendations on. I'm happy to hear your success story though, thanks for sharing! ❤️

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