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Transplant anti-rejection medications. What's your advice?

Transplants | Last Active: 5 days ago | Replies (362)
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@rosemarya

Hi, @gerryp. I thought that I would pop in for a minute to admit that I have no experience to share about changing to a different antirejection medication. I have been on Tacrolimus for nearly 15 years along with Cellcept. Prednisone was eliminated by kidney dept after 5+ years. One thing that I have had the good fortune of experiencing is how closely the liver transplant team and the kidney transplant teams operate for our best outcome. I remember that I had questions (and frustrations) about my Tacrolimus and prednisone. I found out early on that what is good for one organ is not necessarily best for the other. I can also remember that each team would explain their decision based on current research along with my current lab levels.
I guess what I'm trying to say is that I encourage you to keep on asking questions. I think I saw you on one of the zoom support sessions, so I know you are in good hands at Mayo.

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gap | @gerryp | Jan 7 2:15pm

Thank you Rosemary. The more I research this the more I learn about the impact of different medications. I was on dialysis when I went into organ failure early on - and I don’t really want to have that in my future if I can at all help it. So I ask questions but I don’t really get good answers. This was the first post that l saw where someone had made the switch in medications. I don’t want to second guess my wonderful docs but I also recognize that we have to advocate for ourselves.
I do try to attend the weekly Zoom meetings. This group provided me with so much hope when I was so very ill. The least I can do is try to pay it forward. I wish I had known you were on the calls! So many of the participants are unaware of the MayoConnect blog. I find it super helpful and have promoted it on the support group calls. Please let me know when you are on the call next time if you see me there. Thanks for all your great counsel on the connect site. Gerry

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