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@gphetteplace

Hi! Thank you for starting this discussion. The weirdest effect I’m having is nocturia, which apparently can be a side effect of the Tacrolimus. I haven’t slept through the night in the two months since transplant since I have to go to the bathroom four times a night, even if I stop drinking at 6:00pm. Any one else have that problem? Does it get better?

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Replies to "Hi! Thank you for starting this discussion. The weirdest effect I’m having is nocturia, which apparently..."

Welcome to Connect, @gphetteplace
You have brought something up that I never knew but that may be affecting me also! I googled sirolimus and that too can cause nocturia. I take sirolimus as my immunosuppressant after a liver transplant and I also have nocturia. No one ever suggested that the immunosuppressant could cause that, I assumed it was just typical incontinence. I also find that even when I stop drinking early, the urine tends to come out during the night. One doctor offered an explanation for that -- when you are upright during the day the fluid goes down due to gravity but when you are prone it moves up within your body. Sounds plausible.
I have had Botox two times for incontinence and it has helped a little bit. Unfortunately having Botox for incontinence very often causes a UTI too and both times that has happened to me. The urogynecologist gave me an antibiotic to take for four days, starting with the day of the injections, to try to ward off a UTI but it didn't work, not too surprising since we are more prone to infections. I did not have any pain with the UTIs just a tingling. I wonder if that's because the Botox numbs the nerves, I plan to ask the urogynecologist about that.
I am 3.5 years beyond my transplant so if my incontinence is from sirolimus I would have to say it does not go away. It is possible though that mine is simple incontinence from other causes. I hope that yours will go away, I know too well how much getting up a lot at night affects you, it is very disruptive to your sleep. I often find I need a nap during the day.
JK

@gphetteplace i am almost 1 1/2 years post transplant. I take tacrolimus 1mg and have no side effects whatsoever as far as nocturia or bladder issues. I do take Prograf which is not a generic brand of tacrolimus. I don't get up to urinate during the night and I drink at least 48 oz of water in the evening prior to sleep. I also drink water if needed during the night which is only to alieve a dry throat which doesn't happen often. I have never had a UTI in my entire life. I'm sorry you're going through this but I can offer no explanation just my own experience.

I am 2 years, 4 months post liver transplant. I, too, do not sleep during the night, with frequent (3-4) trips to urinate. The water consumption has not made a difference, I did not know that the tacrolimus and nocturia might be connected. It has just become a part of “transplant life”. I take 2 mg am and pm, along with celcept. Come to think of it, the waking up/not resting well has gotten worse since they have upped my tac dosage. It is a constant juggling act, moving puzzle pieces. I fully trust my Mayo, Jacksonville, team and thank the Lord and my donor daily for this “GIFT OF LIFE”!

Yes it does get better. I couldn't sleep well until they lowered Tac level. I started with sleep study. I think u r too close to transplant. Sleep nap whatever it takes to heal ur body. U will have sleep. I do breathing exercises before bed to lower my heart rate.