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Started on Sirolimus or Everolimus after discontinued Mycophenolate?

Posted by benedict66066 @benedict66066, 4 days ago

Have you been started on Sirolimus or Everolimus after Mycophenolate has been discontinued? Do you notice any side effects? Did you feel better or worse with the switch? Thanks for any help.

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jimb43581921 | @jimb43581921 | 3 days ago

They stopped my mycophenelate 8 months after my liver transplant to help me recover from diverticulitis. Initially, I was told they would restart it after 2 weeks, but they ultimately decided to stop it for good. Since then I'm just taking Tacrolimus. While I can't offer any experience with sirolimus or everolimus, just stopping mycophenelate made a huge difference in my digestion and energy level.

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benedict66066 | @benedict66066 | 3 days ago

Oh! Thank you so much for this. Mycophenolate has been a real problem. It's good to know that you were only 8 months out from transplant, because I have wondered if they were not withdrawing it because I am still within my first year. (I'm approaching 9 months.). But so sorry about diverticulitis! Are you also taking Prednisone?

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jimb43581921 | @jimb43581921 | 3 days ago
In reply to @benedict66066 "Oh! Thank you so much for this. Mycophenolate has been a real problem. It's good to..." + (show)
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Oh! Thank you so much for this. Mycophenolate has been a real problem. It's good to know that you were only 8 months out from transplant, because I have wondered if they were not withdrawing it because I am still within my first year. (I'm approaching 9 months.). But so sorry about diverticulitis! Are you also taking Prednisone?

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@benedict66066 My prednisolone was stopped at around 5 months. I think it was responsible for most of my mood swings or emotional issues because they stopped when the steroids stopped. The only downside of stopping prednisolone was the joint pain that arrived as my body was slow to restart cortisol production. Thankfully, that only lasted for a little over a month.

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benedict66066 | @benedict66066 | 2 days ago
In reply to @jimb43581921 "@benedict66066 My prednisolone was stopped at around 5 months. I think it was responsible for most..." + (show)
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@benedict66066 My prednisolone was stopped at around 5 months. I think it was responsible for most of my mood swings or emotional issues because they stopped when the steroids stopped. The only downside of stopping prednisolone was the joint pain that arrived as my body was slow to restart cortisol production. Thankfully, that only lasted for a little over a month.

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@jimb43581921 So helpful, thank you.

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