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

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

I was told to stay out of the sun as much as possible after my transplant and put on tacrolimus. Hard to do when you like to fish and disobey the suggestion. I year post transplant I developed skin cancer on my cheek that was surgically removed. Nothing in the 10 years after that but now wear a big brimmed hat, long sleeves and >30 sunblock. No other noticable effects.

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?

Hair loss! One of my first side-effects showed up just days after being released from the hospital when I noticed gobs of hair falling out in the shower. I was so grateful for the new kidney and it seemed petty to care about my hair but I worried if it would never stop. One of my doctors at Mayo Clinic theorized that my hair loss was caused from a combination of trauma to my body from surgery, being severely anemic and as a side-effect from one of my anti-rejection drugs. She prescribed Vitron C (an high-potency iron supplement with vitamin c) to treat the anemia but there was nothing else she could do. My hair continued to fall out to a lessening degree for the next two years until it finally rebounded. I will never have the same hair but it got better. I was recently told hair loss should be treated by a dermatologist which I think is interesting.

This is why I love this group, you all validate things I thought were my own quirks! We can gripe to our doctors and nurses but they just read about side effects where we all live side effects. I don't get up so much at night as I did when I was first transplanted but I notice how frequently I need to "go" after taking my evening meds. My husband and I typically watch TV in the evenings and I have him pause our shows every 40 mins to use the bathroom after taking my meds. I always thought it was just me but I guess not. I also find myself much more thirsty after taking meds and I wouldn't ever want to restrict my liquids.

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

@contentandwell @gphetteplace same with me I get up at least 2 or 3 times a night and I'm on Tacrolimus 1.5 bid interesting but at least with me I can fall back to sleep rather quickly. I'm now just over 2 years post and I was told the same about gravity. I will also say that I have been told I have a rather small bladder and always figured that had something to do with it.

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?

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?