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

I agree and even after many years taking an immunosuppressant, suddenly your lab numbers are off. I am 19 1/2 years post kidney transplant and have been on Sirolimus since day one but still, after some labs, my level is suddenly too high or in the low range, prompting the transplant dept. nurses to ask if I'm forgetting to take it on time or did I not wait 24 hrs. after last dose for the lab draw. So, even after these many years, some months they have me take 2 mg., then maybe 1mg., then maybe 2mg., alternating with 1mg.
Same with Cellcept. Taking it since day one, initially 500mg. twice daily, then tapered to 250mg. twice daily. No issues until about a year ago when I developed bad gut issues. Now on Mycophenylate 180mg. twice daily with no issues.
Anyway, used to frustrate me...as if this is my fault when I'm questioned if I'm taking my meds properly. But then I figure, they're just probably following protocol by asking the questions in order to rule out patient error or misunderstanding. And, beats dialysis or worse any day!

Thank you for writing. That is a great suggestion. I will contact my supplier. Still monitoring weekly but I have my annual 4 yr anniversary checkup next week at Jax Mayo and hope we straighten it out. I'm a bit scared as I feel more light headed and foggy thinking and blurry eyes. Hopefully I'll get some answers next week.

@charlie5454 I so relate to your post. Another thing I discovered in the process of post transplant lab level draws is that the phlebotomist is sometimes unfamiliar with the test & / or is following protocol by rote instruction. They don’t always ask the date and time of the last dose of immune suppressant. Who knows what or if anything is recorded? That can make the level seem falsely high or low! I make a point of telling them the date and time and ask them to make sure to record it. Later if the level seems wonky, that is one reason that can be ruled out.

I have had 2 liver transplants, one 2000 and the other in 2017. The whole time I took Prograf/Tacrolimus except for a trial month on sirolius. I was allergic to it so I went back to Tacrolimus. My levels were higher in the beginning now I have cut back. My levels were higher years ago but much lower now. My tests typically are a little below or on the lowest numbers in the normal range. I have never had an organ rejection over 24 years however, my current doctor team thinks the Tac may be the reason for my kidney damage and pheriferial neuropathy in my feet and ankles. My advise is to try and get your Tac levels around the low normal area. But, some people have organ rejection and need higher doses. Talk to your doctor about possible side affects of your medication and Google these things so you can talk about things intelligently with the medical staff.

You are so right! I live on a peninsula in. The UP with a very small health center (part of their larger system 125 miles away) and the phlebotomist(s) are quite unfamiliar with transplant/immunosuppressant folks (only one remembers me after being up here 10 years) and unless I specially tell them to mark down when my last dose of Sirolimus was before the draw, it gets sent to Mayo, Rochester without letting them know when and how much my last dose was. Very frustrating. So right, while. I used to get my hackles up when one of the Transplant Team nurses would question me as to when & how much I'm taking of one of my meds...but then I'm like "hey Mayo folks are smart but not clairvoyant, and if the date/time isn't clearly stipulated on the accompanied paperwork (which their mail-in kits clearly instructs), how would they know.
Thanks for your comments and sending best wishes for you.
(PS...just got home from Gift of Life last night where we stay while at Mayo...love that place!)

This is interesting. My labs are done at a local lab and I never have been asked when I took my envarsus xr last though it's always 8 am the day prior. Great information. Thank you for this suggestion.

I just found this group. I am learning so many new things. Thank you everyone for sharing your thoughts and comments. Bless you all and God bless all of us who get to work with wonderful people at Mayo’s hospitals and their wonderful staffs. I hope you have a wonderful day!

JUST FOUND THIS GROUP.
ON 04/09/2009, I RECEIVED A LIVER TRANSPLANT. ON THE ONE YEAR ANNIVERSARY, REJECTION OCCURRED. I WAS BOMBARDED WITH PREDNISONE. PILLS CONTINUED FOR AN EXTENDED PERIOD OF TIME. EVERYTHING TURNED OUT FINE. A YEAR AND A HALF AGO, MY ALK PHOSPHATASE BEGAN RUNNING IN THE 200s. IN FEBRUARY OF 2024, I GOT A TAVAR HEART VALVE INSTALLED. THIS INCLUDED USING A BLOOD THINNER. IN JUNE, PROBLEMS WITH MY LIVER SHOWED UP. HOSPITALIZED JUNE 30TH, RELEASED JULY 4TH, PUT ON 40MG PREDNISONE, INCREASED TACROLIMOUS 6MG. THROUGH THE MONTH OF JULY, BLOOD TESTS TWICE A WEEK. SO FAR WHITE BLOOD COUNTS UP, ENZYMES UP. ANY IDEAS? DON'T WANT TO LOSE THE LIVER

@skjones welcome to Mayo Clinic Connect. What organ did you have transplanted?

@ronnorth welcome to Mayo Clinic Connect. Sorry that you experienced a rejection especially at the 1 year anniversary mark. It is good that everything turned out fine. I’m sorry that you’ve been having some other problems the past year and a half. I had a pancreas transplant and I’m not that familiar with specific liver transplant issues. Hopefully other members will chime in with ideas for you. You are not alone.