Tacrolimus blood levels: Do yours vary?

Posted by hello1234 @hello1234, Dec 14, 2022

Hi all, 😊
When you have your Tacronlimis blood level tests done, how much does your numbers vary? Have you seen your Tacronlimis blood level change up to 2 points higher or lower than your previous result?
I am a two year post kidney transplant patient. Since day one in the hospital, I have taken my Tacronlimis and Cellcept (MMF) with food to avoid stomach issues. I am starting to wonder if the food is making my results vary each time or if everyone that takes Tacronlimis sees their Tacronlimis blood level change a couple points. Is your blood level always a consistent number each time?
Thanks for your help everyone! 😊

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Hello @hello1234 234.
My tacro levels were never the same from one draw to another, yet for the most part they were within therapeutic range. If your numbers are still within the levels the doctors want for you - and that will change over time - it's a "not to worry."
As far as food and meds, what you have for dinner the night before labs can also affect your levels.
Are your levels outside of what your team is looking for?
Best wishes,
Ellen

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Hi @hello1234 I also took my tacro with food as directed by my team to avoid stomach issues. Just as @estrada53 experienced, my trough would fluctuate a little depending on what time the blood draw took place.
I took the tacro 8 AM and 8 PM. If my blood was drawn the next morning around 6:30 the number would be at the perfect level. If the blood draw was at 10 AM, then there would be drop. If your team isn’t concerned and it’s in the therapeutic level then it’s not an issue.
LOL. Don’t go looking for trouble! That’s why you have a transplant team. ☺️

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Hi @loribmt and @estrada53 😊
Thank you so much for sharing your Tacrolimis stories with me. Your details are always very helpful!
My current situation is the following. I tested positive for BK virus in August and I am still positive for BK but it's resolving nicely. My Cellcept (MMF) was reduced to 250mg bid.
My Tacronlimis target is 6 to 8. I have been testing for BK and TAC every two weeks. My Tac blood level has been 6.7, 6.8, 6.1, 5.8, 6.2, 7.0, 5.9 , 6.4, 5.5, 6.3 and my latest Tac was 5.2 (low). So most of the time, I am in the 6 to 8 range but every once in a while a "5. something" shows up.
I am wondering if what I am eating for breakfast may be affecting the number....Or maybe my timing of the dose if I run 15 or 30 minutes late taking my pills. Do you ever run late for your pills?
While trying to resolve the Bk virus infection, I assume being at the low range of 6 is best. So I am not excited about the idea of increasing my dosage, but I don't want to put myself in danger of rejection either. I am hopeful to not take more Tac if possible. Since I have always taken my meds with food, I didn't know if my results may be more reliable with no food. If I have another 5.2 this week then I will need to increase my Tac dosage to assure I am reaching the 6 to 8.

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@estrada53

Hello @hello1234 234.
My tacro levels were never the same from one draw to another, yet for the most part they were within therapeutic range. If your numbers are still within the levels the doctors want for you - and that will change over time - it's a "not to worry."
As far as food and meds, what you have for dinner the night before labs can also affect your levels.
Are your levels outside of what your team is looking for?
Best wishes,
Ellen

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@estrada53
You mentioned what you have for dinner the night before the blood draw can effect the Tac blood result. Is it the amount of food or are there certain foods that may effect the number? Thank you for all your help!

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@hello1234

Hi @loribmt and @estrada53 😊
Thank you so much for sharing your Tacrolimis stories with me. Your details are always very helpful!
My current situation is the following. I tested positive for BK virus in August and I am still positive for BK but it's resolving nicely. My Cellcept (MMF) was reduced to 250mg bid.
My Tacronlimis target is 6 to 8. I have been testing for BK and TAC every two weeks. My Tac blood level has been 6.7, 6.8, 6.1, 5.8, 6.2, 7.0, 5.9 , 6.4, 5.5, 6.3 and my latest Tac was 5.2 (low). So most of the time, I am in the 6 to 8 range but every once in a while a "5. something" shows up.
I am wondering if what I am eating for breakfast may be affecting the number....Or maybe my timing of the dose if I run 15 or 30 minutes late taking my pills. Do you ever run late for your pills?
While trying to resolve the Bk virus infection, I assume being at the low range of 6 is best. So I am not excited about the idea of increasing my dosage, but I don't want to put myself in danger of rejection either. I am hopeful to not take more Tac if possible. Since I have always taken my meds with food, I didn't know if my results may be more reliable with no food. If I have another 5.2 this week then I will need to increase my Tac dosage to assure I am reaching the 6 to 8.

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Since the BK is responding nicely to the lowering of the Cellcept, allowing your immune system to get the virus under control, it’s not likely you’re going to have an increase in the Tacro dosage to compensate. That would defeat the purpose. It would again increase your immunosuppressant level and slow the immune system down. Your doctor lowered the Cellcept to ‘unleash the hounds’ of defense. ☺️ Of course, it is a balancing act between defending against the virus and protecting the transplant. So your doctor’s will be following the other blood numbers too, not just tacro.

Some foods and meds, such as grapefruit or pomegranate juice can increase the amount of tacro in the body and other meds can cause it to be processed through faster. Your numbers don’t look alarming from my experience. I had fluctuations too and most of them could be explained by timing on the tests and if I was late for a dosage. Your tacro numbers might even be affected by the decrease in your Cellcept. That’s another variable that’s changed besides the BK. As an example, I had a med swap from IV form to capsule form of a medication about 2 months after transplant. My trough level of 7 had shot up to a whopping 22.6 in a matter of days. The new med interfered with processing the tacro out of my body so toxic levels built up rapidly. So it shows how med interactions play a role with each other.

Consistency is really important especially since you’re on 2 anti-rejection meds and one has been reduced to control the BKV.
Your team is monitoring you closely. If there’s an issue they’ll let you know. Relax and enjoy the holidays! ☺️

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Hello,

My Tacrolimus levels can vary a couple points, I do know that I see a difference if I do not drink enough water- I've been told if I'm not drinking enough, it can affect the medication level/absorption as well as the GFR/Creatinine levels. Fluctuation is normal (within range) and there are so many factors that can affect our blood levels such as sleep quality, taking meds at same time each day, exercise, fluids, etc. Sounds like you're doing everything right, best wishes! 🙂

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Thank you so much @brookestrong 😊
You are so right about all of the variables that can effect our labs! Thank you so jumping into the discussion. Are you a kidney or liver transplant patient? I assume you are also a hiking enthusiast!

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@hello1234

@estrada53
You mentioned what you have for dinner the night before the blood draw can effect the Tac blood result. Is it the amount of food or are there certain foods that may effect the number? Thank you for all your help!

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I believe that any food high in potassium can affect tacro levels.
Some would be bananas, oranges, potatoes and spinach.
Here's a helpful link:
https://www.bidmc.org/-/media/files/beth-israel-org/centers-and-departments/transplant-institute/tacrolimus1.pdf

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Thank you @estrada53 😊 That's a very helpful link regarding Tacrolimis.... I really appreciate the detailed information!

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Hello,
Yes mine has danced around for nearly 2 years. I take with food in the morning but not at night. We don't eat breakfast till 9. It has started to settle down but I still take 4 in the morning and 3 at night. I am a multi organ patient, liver and kidney.

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