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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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hello1234 | @hello1234 | Dec 15, 2022
In reply to @firecat "Hello, Yes mine has danced around for nearly 2 years. I take with food in the..." + (show)
@firecat

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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Hi @firecat 😊
It's nice to meet you! I am a kidney transplant patient. Which organs did you receive?
My Tacrolimis target range is 6 to 8. But occasionally I will see results like 5.5 or 5.2 which is out of range. I think they want me around 6 since I am also fighting off the BK virus. It makes me nervous to go under the 6, but it also makes me nervous to be over 7 since I want the BK to go negative. It's a very fine line trying to manage. I assume if I continue to hit the 5 range, my Tac dosage will be adjusted up 1mg.

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1 reply
firecat | @firecat | Dec 15, 2022
In reply to @hello1234 "Hi @firecat 😊 It's nice to meet you! I am a kidney transplant patient. Which organs..." + (show)
@hello1234

Hi @firecat 😊
It's nice to meet you! I am a kidney transplant patient. Which organs did you receive?
My Tacrolimis target range is 6 to 8. But occasionally I will see results like 5.5 or 5.2 which is out of range. I think they want me around 6 since I am also fighting off the BK virus. It makes me nervous to go under the 6, but it also makes me nervous to be over 7 since I want the BK to go negative. It's a very fine line trying to manage. I assume if I continue to hit the 5 range, my Tac dosage will be adjusted up 1mg.

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Can't speak to your case, but right now they want me between 5-7. But we are all different.
I believe in trusting your team. My coordinator watches my labs closely when I have a draw.
Trust in God too!!

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1 reply
hello1234 | @hello1234 | Dec 15, 2022
In reply to @firecat "Can't speak to your case, but right now they want me between 5-7. But we are..." + (show)
@firecat

Can't speak to your case, but right now they want me between 5-7. But we are all different.
I believe in trusting your team. My coordinator watches my labs closely when I have a draw.
Trust in God too!!

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Thanks so much @firecat 😊 Which organ did you have transplanted? And how long ago? I definitely agree about trusting the transplant team!... They know what they are doing!

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firecat | @firecat | Dec 15, 2022

I had a liver and kidney on 2/10/2021. My kidney never really took off well enough to do its job so on 11/12/2021 I was blessed with another kidney. I became a priority patient with UNOS because my first kidney never worked right from transplant on.
How blessed I am to share this story.

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hello1234 | @hello1234 | Dec 16, 2022

Wow, Congratulations on your double organ transplant @firecat 😊 That's wonderful! You are correct that we are blessed. Thank you so much for jumping in to this Tacrolimis discussion.

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footballmum | @footballmum | Dec 28, 2022

Yes mine can vary quite dramatically. I no longer take mycophenolate. I take my TAC with food. That seems to help my stomach.

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hello1234 | @hello1234 | Dec 28, 2022

Hi @footballmum 😊
It is nice to meet you! Thank you for sharing your Tac experience with me! Are you a liver transplant patient?

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1 reply
footballmum | @footballmum | Dec 28, 2022
In reply to @hello1234 "Hi @footballmum 😊 It is nice to meet you! Thank you for sharing your Tac experience..." + (show)
@hello1234

Hi @footballmum 😊
It is nice to meet you! Thank you for sharing your Tac experience with me! Are you a liver transplant patient?

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Good afternoon. Yes I am. I had my transplant October 2020. Thank you for asking and welcoming me ☺️

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footballmum | @footballmum | Dec 28, 2022

My TAC levels have been as low as 3 and as high as 11. Based on my height and weight my desirable level is 6. I now have draws every two months instead of monthly, my last draw was 6. So dead on!!!! I don't think people really realize just how hard it is to be a transplant patient.

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1 reply
hello1234 | @hello1234 | Dec 28, 2022
In reply to @footballmum "My TAC levels have been as low as 3 and as high as 11. Based on..." + (show)
@footballmum

My TAC levels have been as low as 3 and as high as 11. Based on my height and weight my desirable level is 6. I now have draws every two months instead of monthly, my last draw was 6. So dead on!!!! I don't think people really realize just how hard it is to be a transplant patient.

Jump to this post

@footballmum 😊
I agree with you that most people don't understand that a transplant patient has a lot to deal with after the transplant to get our meds "just right". Congratulations on your perfect SIX! What dosage and medication name do you take to achieve your perfect Tacrolimis 6.0? I take 6mg long-acting Envarsus XR and I usually achieve a Tac blood level of 5 to 7. I think it varies so much because I take my pills with breakfast. (It sounds like you eat breakfast too!)

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