What did you experience when cutting down Tacrolimus?

I was 8 mg for a few yrs until I cried uncle. I became more clear headed, less tremors, less side effects. I am now on 1 mg in am and 2 mg in pm. Everyone reacts differently.i also sleep way better. Good luck

I feel like I am in a lot of tac to 3am 2pm do not sleep well at all. I am so ready to decrease. 3yrs LTP tac is also ruining my kidney numbers to.1 acute rejection 2022. I am also on celcept which is knocking my wbc way down 2.0 I am hoping I can get off of this to. I take 3/3 of that right now.

In a sleepless night I stumbled across this board. My transplant was 12/2021 I have had cramping issues my whole life. It became even worse PT. I’ve done a lot of looking and this is the first time I have heard magnesium.

Thank you for sharing!

I’m on 2mg Morning and Night working down to hopefully not needing it. Cautiously optimistic.

Holy cow! I'm a transplant noob (Liver 2.0 arrived in Dec, 2023) , but I'm taking 20mg of Tac daily (as 10mg/10mg).

Tremors & headaches pretty constantly, but I was also suffering from debilitating itching (puritus) for almost 3 years. During the last 18 months, I probably didn't sleep more than a couple broken hours per night before transplant due to severe itching, so compared to that I'll take tremors & headaches any day. Though I do hope the side effects decrease in severity/frequency over time.
I guess I'm just taking a massive dose of Tac and I can decrease it over time???

@gotanewliver, Welcome to Connect and Congratulations on your recent liver transplant! ❤️ I read in another post that you had your transplant at Mayo Rochester. That is where I received mine in 2009. I can easily remember the itching and sleepless nights before my transplant along with the adjustment to the medications afterward. I can assure you that the tremors will diminish, but might not go away completely, as your medications are adjusted. Also your lab schedule will be adjusted as you move farther out from your transplant. As for the dosage of Tacrolimus, it depends on your individual labs and other monitoring.

It is okay to contact your transplant coordinator about your headaches and tremors, or any other bothersome symptoms. Are you on the Mayo Clinic Patient Portal?

@gotanewliver, How is your recovery going? What would you like to ask?

Welcome to Mayo Connect, @nlad4, I am so glad that you found Connect and have joined with other transplant recipients as we share and support each other.
I am sorry to hear that you have been experiencing cramps for such a long time. Is that why you were sleepless the night that you discovered Connect? Since you had cramps before transplant, I am wondering whether the cause is related to the Tacrolimus. Have you and your transplant team discussed this?

I transplanted 14+ years ago and expect to be on tacrolimus and Cellcept for the rest of my life. Might I ask, for my own curiosity, how you are "working down to hopefully not needing it"?

@rosemarya - Thanks for the info. I did discuss with my post-transplant coordinator at Mayo, and she basically said the same thing. I guess I probably should have more accurately said that I hoped the side effects "decreased sooner rather than later!" 🙂

As I mentioned above, the recovery is going well so far. I just have to remind myself that recovery takes time and I can't get greedy by wishing it was better sooner. I don't want to hijack this thread too far off topic, so I'll probably do a more complete post a bit later with some questions and additional details.