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

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

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 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

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

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?

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?

Thank you. Yes, I have had side effects since my transplant two years ago, but my transplant team does not want to change my regimen saying it is better to protect my kidney but citing no studies or reasoning. This is up to them, but I am curious after reading about the low Tacrolimus dosages and eliminating prednisone here. Can anyone cite any studies? Also, what kind of side effects are people having leading to the switch?

Hi,
I had a kidney and pancreas ( separate times). I was on prednisone for 2 yrs then weaned . When I was being taken off pred they up my cellcept, that was harsh on my stomach, too toxic for me, then they lowered the cellcept. Now I am 1 mg trac twice a day and 500cellcept twice a day. I also would like to find studies on how much of these a person should take everyday of their life . If there is certain lab work to look at to see if its safe to lower one or the other. Wishing you luck to get off pred! That one scared me to take rest of my life. Temporary makes sense to me

Thank you, Shannon. I found this post from 2020: I was taken off most of my anti-rejection drugs fairly quickly. Within 4 months I was taken off cellcept and prednisone. Then my tracilomus was reduced to 1mg every 12 hours.

I am two years in, and still take 5 mg prednisone once a day, 500 mg mycophenolate (cellcept) twice a day, and 3 mg tacrolimus twice a day with a 5-6 ng/ml level. What clinically indicated a reduction like this and yours? What prednisone dose were you taking, what is your tacrolimus level before and after the reduction, and what were your side effects leading to the reduction?

Well... I kinda kicked and screened to get off pred, it causes high blood sugars and glaucoma etc. They reluctantly weaned me to 2.5 . saying its a low dose, I was scared about the everyday threshold of it building in my symptom over the years.
As I completely stopped after a wk or 2 of 2.5 mg, I felt no difference just better with time. Today my prograf level is 3. However I am almost 23 yrs out from Pancreas tx and Kidney has been over 10 yrs now.
I would love to know if there has been any indications if at at a certain age and duration of taking these drugs every day when we can stop them before they cause more damage than good.