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Transplant: Has anyone tapered off prednisone after decades of use?
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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My own kidney transplant was 18 years ago from a sister who was a perfect match. I am still on 5 mg per day of prednisone and will be the rest of my life. My daughter works for a company that stages clinical drug trials with her focus being kidney transplants. They have tried multiple times for trials to taper off prednisone. Every trial has been a failure and closed.
I have however lowered my tacrolimus and my FK score is now 3 and I am very healthy.
Good luck but be careful. I am interested to know your outcome!
I have been on predisone since I was first diagnosed at 16. For years now I have been on 5mg of predisone a day. That dose doesn't give me any side effects. Personally, I don't want to go completely off of predisone. But you have to do what works best for you. I am also over 38 years post liver transplant. I have been very blessed on my transplant journey. Best wishes to you on your transplant journey.