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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14 9:57pm | Replies (1677)Comment receiving replies
Hi, This is my first comment in a MAYO connect group. I hope it's well enough matched to the topic. Here goes...I have 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 cortisone on it's own again? Thank you for reading my post. I really appreciate it!
Replies to "Hi, This is my first comment in a MAYO connect group. I hope it's well enough..."
I am not on prednisone due to a severe reaction immediately after my transplant. But I have been treated for thyroid issues by an acupuncturist. My understanding is that acupuncture can also be helpful in regulating one’s adrenal glands and balancing of cortisol production.
This could be useful as you reduce your dosage, as well, because it is also helpful for drug withdrawal symptoms, relaxation, etc.
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@looperdolly, Welcome to Mayo Connect. Congratulations on 30 years with your kidney transplant. Anniversaries are special! 30 years is an amazing milestone. I want to hear about your story, but let's take care of prednisone first.
I am not aware of any of our current transplant members who have mentioned a long term usage such as you describe. I want to invite you to post your question as a new discussion in our transplant group: "Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? " That way others will see it more easily. I can help you. Just let me know!
I am 12 years with liver and kidney transplant. I took prednisone for 5 years (5 mg daily) and then research showed that I could taper off. I know that 5 years does not compare to your long term prednisone, but I want to add that it was challenging for me to do as the aches and pains, headaches, moods etc were bothersome. My Mayo transplant team suggested a taper, and my local PCP worked with me when I had to adjust the taper. I also discovered that the prednisone had been covering my exercise induced/allergy induced asthma and so that involved a temporary halt to the taper.
Here is a discussion where other members on Connect are talking about prednisone. As a member, you can join in anywhere.
Groups >Polymyalgia Rheumatica (PMR) >Tapering off of Prednisone
https://connect.mayoclinic.org/discussion/prednisone/
Here is some information you might find helpful as you get started:
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
https://www.webmd.com/drug-medication/prednisone-taper