Transplant: Tacrolimus, What’s Your Target Range?

Hi! While it’s interesting to see what everyone’s dosage is for Tacrolimus, (Prograf) keep in mind each person’s requirement is different. What the appropriate level is for one person is not necessarily the optimal amount for another. Too low and there’s a huge risk of rejection of the organ. The body’s immune system views the organ as an invasive/foreign object and its goal is to attack and defend! That’s what our immune systems do. So it’s crucial to keep the tacro at a level that is right for each person’s unique biological construct.

That’s true also with stem cell transplants, where tacrolimus, the anti-rejection/immunosuppressive drug, is used to help avoid Graft vs Host disease until the new immune system learns to recognize the foreign proteins in the recipients body. My dosage was different than four of my cohorts who kept in touch during our recovery periods and into our post transplant life. One person, is 3 years post transplant and still taking Tacro at a fairly higher dosage of 2 mg daily. Anytime she tries to taper, her GVHD flairs as the new immune system still sees her body as a threat. Most stem cell patients can taper off starting around 6 months, I was on it for 2.5 years to avoid GVHD at a very low dose of .5mg daily. But if I remember correctly, I was on 6mg daily initially for a few weeks.

With solid organ transplants it’s my understanding that, over time, you’ll be weaned to the lowest amount required to be able to avoid rejection of the organ. There are a few people who have been able to halt the meds altogether if they have a match that’s very close to their own. But this is done under very close guidance with the transplant team and can take years to happen.

There are clinical trials being held with some breakthrough technology that may allow people with certain transplants to eventually wean off the immunosuppressives altogether! That would be amazing for the millions of organ recipients.

Congratulations on your 2 year anniversary! Are you having any side effects from the Tacro?

Hi @loribmt 😊
My local nephrologist requested that I ask Mayo about the quality of the match to see if I could possibly safely lower my Tacronlimis dosage. I looked through my patient portal tests to see if I could find anything like PRA, HLA antigens, antibodies, DSA report etc and I don't see anything like that (but I may not be looking at the right place in the portal). My nephrologist mentioned what you touched on.... That some recipients are low immunologic risk and some are high risk. I will be meeting with transplant in a couple of months and hopefully they will be able to help me understand my level of risk so I can share it with my nephrologist. I am curious if anyone has had a conversation like that with their organ transplant team?

@hello1234, I am in complete agreement that you should bring this up with your kidney transplant team. Be sure to explain that your are asking for the information so that you can share it with your local nephrologist. That a they can be sure to include the medical information, as well as their thoughts about any changes in the tacrolimus. I don't know how much experience your local nephrologist has with kidney transplant, but it is possible that there are some key elements related to kidney transplant (your case specifically) that are going to be involved in their reasoning.
As you already know, I am a liver and kidney recipient. My tacrolimus dose was higher immediately after transplant. And over the years, it had been lowered as indicated by my liver health, kidney health, and labs. I have been at a stable dose for the past 8 or so years. And it is interesting to me that it is at a level just below my 'suggested' range. So, as an individual, my ideal maintenance dose is lower than the 'book' calls for. Another interesting thing that I have learned it that with a combined liver and kidney transplant, the dose is different than for a just a kidney. And that has required a careful cooperation between both departments to determine a happy balance. This just goes to show how complicated (special) we are!

Will your upcoming appointment be your annual review?

Hi @rosemarya 😊 Thank you so much for your very detailed response! It sounds like my local nephrologist is hopeful to get my Tacronlimis dosage a little lower if he can feel confident that the organ match is low immunologic risk. (Maybe that is what transplant did for you since you ended up lower than "the book" range!). I think the goal is always to avoid rejection without over-suppressing. Tough balance act!
Thank you again Rosemary for letting me know your experience with Tac dosage. Did your transplant team ever give you details about your match...HLA antigens, antibodies, etc?

Hello and I agree with the others we are all in different phrases. I myself went thru some infections with CMV and Parvo B19 and during that time they lowered mine under a hospital setting to be between 5-7. And took me off of celcept so I'm only now am on Tacrolimus. But I've also been stable for 4 years now and no sign of rejection. Mine was a Heart and so I don't know if it's different for us over Liver or Kidneys. Good luck tho with your doctors and it sounds like your seeking the right avenue to talk with your team

@hello1234, That is a good question about whether my team has given me details. In truth, I have never been interested in knowing the medical specifics because I do not have any medical experience or familiarity with the many tests/labs that are performed annually and do not now what they mean. I realize that others might be interested, though.
At 13 years post transplant, I do have routine labs drawn every 3 months (more if needed). You are right that the goal is to prevent rejection with a delicate balance - enough to protect transplanted organs without causing any harm to other organs.
I am sorry that you are facing concern and confusion about your tacrolimus concerns. I expect that you will be making a list of your questions in preparation for your Mayo visit. Maybe you will return to teach me after your appointment.
So, you see the transplant team in a couple months; When do you see your nephrologist again?

Hi @rosemarya 😊
Yes, I LOVE to know everything about every test...what the test is looking for, and how I am doing on each test. Actually, as a little girl I really wanted to be a nurse and I am still extremely interested in everything medical. I love it! I find the whole medical field fascinating and awe inspiring. It's the one field that literally saves lives. Now that I am a transplant patient I am learning about all kinds of new tests and I love it! I am scheduled to see my local nephrologist in a couple of weeks. I am going to ask him to write down the tests he is interested in. I will be at Mayo in August for my annual so this will work perfectly. My understanding is the tests are called HLA tissue testing, SAB and DSA but I can not locate any of those test names in my patient portal. Do you see any of those in your patient portal lab work results for your annual visit labs? I am pretty sure these are done during our annual visit. Maybe I am not looking in the right place on the portal., but I can't find mine. Thank you for everything Rosemary ❤

Hi @danab 😊 Thanks so much for letting me know your successful experience with reduced Tacronlimis (5 to 7). At post eight months, I also came down with CMV too and they reduced my Cellcept. Did you ever have HLA, DSA, or SAB testing during an annual visit that you know of? If you see it in your patient portal, can you please let know where to find that lab work? I can't seem to find it for my local nephrologist to see. I think it's in there, but I am not finding it or it's named something different. Thanks Dana!

@hello1234, You are amazing!! No wonder you have so many wonderful questions that we all benefit from.
You mentioned tissue testing, and that makes me wonder if you will find information with your kidney biopsy results. You should have had one or two already. Have you looked thru your past history or visit summaries in the portal? There should also be a summary of your transplant surgery.
Happy reading!

@rosemarya You brought a BIG smile to my face! You are correct... I recently discovered the surgical notes of my transplant and I was sooo excited. I read the surgical notes, the anesthesiologist notes, etc. It was super cool to read about everything that was going on in that operating room.....the BEST story ever! Thank you for being so terrific Rosemary ❤