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

Hi, @taco. Welcome to Mayo Connect.
I am a liver and kidney transplant recipient, and over the 15 years with my transplant, my medications have been adjusted. My transplant team is the one who makes the changes based on my routine labs which are now drawn every 3 months. On a couple of occasiona, I have contacted my nurse coordinator to describe some uncomfortable symptoms, and upon extra lab test, my tacrolimus levels were higher than my assigned target range. That is when they had me lower my level, and redo labs in 2 weeks to be certain that the level suitable to protect my organs. My liver team and my kidney team work together to establish my best dosage and/or medications.
I have taken cellcept and tacrolimus since day 1. I was taking prednisone for several years, until research showed that I did not need to take it anymore. At that time I was tapered off of it. Different medicines work differently and so each one of us might react differently.
Each of us is going to be prescribed the dosage according to our individual needs. That is why we are so carefully monitored throughout oue lives.

@taco, How long ago was your kidney transplant? Are you having side effects that are bothering you? What has your transplant team had to say or suggest regarding those side effects?

I am interested in what the risks are of lowering Tacrolimus dosages for those with kidney transplants, switching to other meds, and eliminating prednisone. I see a number of people lowered to 1mg twice a day? Was your tacrolimus level still above (5.0 ng/mL)? What side effects were you trying to avoid? What research is there on the risks of lowering the dose below 5, switching to other medications, and eliminating prednisone?

That is awesome, do you feel way better since you stopped the cellcept? Seems like you had a really good match.

Hi Girl. Yes I am watching my mouth for any pop up soars that appear. There is nothing to cure except go off the meds. Thank u for my congrats..looking back it is remarkable to think of that time and remember everything....
I feel good,,, I think I went out to eat with my friend. Anything going on for thanksgiving? So many items to tend to on that day if u are hosting.I remember,,,In california most friends were transplants what we called them
so two yrs in row I hosted that day and cooked two turkeys . Shrimp cocktail..stuffed mushrooms..dessert
lasted to 12:00 midnight.I was younger and could pull that off....today,,,its,,whats on the menu...Have a great holiday.Always great to hear from Mayo

Hi, @jackie421blfdgurl, and Congratulations on your October 4th anniversary of your liver transplant!
I hope that your body will respond favorably to the sirolimus medication this time. I don't have experience with Sirolimus, but I am aware that each of our antirejection medications carry a long list of potential side effects. I know that you will keep your doctor informed about any concern. I wonder if he/she has anything to ease the sores if they return?

Did you feel well enough to do anything special on the day of your anniversary?

Hi. Ya all. Hi rose ary. Jackie here from joisey!!!
Hope all is well.
Prior to Halloween,
I was taking 4 mg of tacrolimus a day down from 6 a day. I now am off that drug but taking sirolimus 3 mg a day.i still have numbness in feet and legs. And bathroom issues ..I will see how all this goes after stopping that pill. October was 4 yrs for me.but last time I was on sirolimus I broke out with mouth soars.now I have to keep an eye on this too.i will mention the study to my liver Dr. Take care Rosemary

Hello Rose, thank you for reaching out to me, indeed my transplant team monitors my dosage every 2 months. My side effects are very minimal thus far.

Hi, @mwai. I want to welcome you to Connect. I see that you received your liver transplant 6 years ago. My transplant was 15 years ago. I am glad that you have joined the conversation. I have, over the years, been reminded that our medications and dosages are adjusted according to our individual needs. I still have routine labs drawn every 3 months so that my transplant team can monitor me from a distance. And some have needed adjustment over the years.
Are your medications causing any unwanted side effects that has you wondering about your dosage? Are you being monitored by local doctor or transplant team?

That’s the first I have heard. 1mg every 12 hours is definitely a blessing. It’s Been 6 years post liver transplant for me and taking 6mg a day. I guess I have long ways to go.

I have been teduced to 0.5 mg, twice a day, after 10 years. I am now 21 years out from heart transplant. I also take mycophenolate 1000mg twice a day. Never had issue with meds or rejection. Truly blessed!