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Transplant: Vaccines: Covid, Flu, RSV

Transplants | Last Active: Oct 14, 2023 | Replies (44)

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@blbird33

Charlie5454s, thanks for your info. Are you taking Sirolimus as a form of Tacrolimus? I am having such difficulty with Envarsus XR (another form of Tacrolimus). The levels are either too high or too low. Now they tested too low so I get my dose increased which causes havoc with my anxiety and shaking. Were you put on Sirolimus due to troubles with Envarsus or Tacrolimus? My TC doc told me any med other than Envarsus XR or Tacrolimus is high risk for kidney rejection. Got me too scared to try anything else. Thx, BB

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Replies to "Charlie5454s, thanks for your info. Are you taking Sirolimus as a form of Tacrolimus? I am..."

Hi @blbird33 😊
It is great to hear from you! As we wait for @charlie5454s to respond to your question about Sirolimus, I want to let you know that I have been having the same challenge keeping my Envarsus XR (Tacrolimis) level in range too. I was doing great for about a year, but now all of the sudden the level is bouncing around a little bit out of range on both sides (too high one week and then and too low the next). I am supposed to keep in range between 6 and 8. I thought maybe eating high potassium foods like sweet potatoes, bananas, and spinach may be causing it or maybe a fast or slow digestion on different days. Do you have the same target range of 6 to 8? Do you always take your pills at the same time and have your blood drawn about the same time when you go to the lab? I know how frustrating it can be to try and figure out why it's bouncing around, but I do like the long acting Envarsus medication.

Hi. I've been on Sirolimus since day 1 of my transplant in 2005. It's tricky to keep the level where my team wants it...labs often show it's too low or high and then my dose gets bumped up (or down) a mg. until next lab check. But currently it seems steady at 3mg, once a day. I don't know how much it differs from Tacrolimus, but Sirolimus has a possible side effect of AVN, which I've been "fortunate" (not) to experience. Hence, over the past 17 years, I have had both hips, a knee and a shoulder replaced. People wonder wouldn't it have been easier to switch meds rather than switch out joints. Nope...because evidently Sirolimus is doing what it should be doing for my kidney and that isn't as easily replaced as a hip or knee is, as we all know. And being that Dr. Mabry (ortho-surgeon at Mayo) is awesome, these shiny parts are working just fine. Good luck!