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

Transplants | Last Active: 16 hours ago | Replies (371)

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@contentandwell

@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially, they recommended that I drink 80 - 100 ounces of fluid a day and that helped, but not enough. They then changed me to sirolimus and since then I have been fine.
The only noticeable effect I had was thinning hair but the transplant team suggested that I take biotin so I do. I have continued to take it because it is also good for your fingernails and mine are very thin.
I was able to drop from 4mg a day of sirolimus to 2.5 when I chose to take it consistently without food. I set my alarm for 6:30, get up and take my medications, and try to go back to sleep for another hour but usually that does not happen so I just get up and do something until the hour has elapsed. Since I tend to be inconsistent when I eat my breakfast, and I am supposed to take the sirolimus at the same time daily, I find this works for me.
JK

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Replies to "@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially,..."

@contentandwell
I did know that some people switch meds so your experience with creatinine gives me helpful insight into this. I guess everyone tolerates meds differently. I take tacrolimus but I have heard that sirolimus has a lower rate of cancer. Have you heard this?

Does Sirolimus cause you any bad side effects that you did not have with tacro? I think tacro has caused peripheral neuropathy in my feet and legs. I want to switch to Sirolimus. Do you have to take cellcept and prednisone?