Liver Transplant: What is the lowest dose of Tacrolimus anyone is on?

Posted by knobhead @knobhead, Aug 11 7:25am

What is the lowest dose of Tacrilimous anyone is on? I’m down to 2mg twice a day after 7 years but am wondering if anyone is surviving and well on a lower dose?

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@knobhead I am 58, nearly 5 years post liver transplant from a deceased donor, my liver failed in an acute way due to autoimmune disease. I am always concerned about my kidney function given everything but it’s been okay. I take 2 mg of tacrolimus per day, divided in 2 twelve hour doses and I have monthly labs. This is relatively low but I think more average 5 years out with my age and weight . At times my monthly tacrolimus levels are too low or too high- my understanding is that it’s a highly sensitive blood test. Sometimes I have to return for a second test and usually my tacrolimus dose holds steady at 2 mg per day with a 5-8 range. My PCP encourages hydration, meditation, proper nutrition and exercise which I think is as important as our medication doses.

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I am on 1 mg am and 1/2 mg pm. I will be celebrating my 9th year in November.

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Profile picture for gracie5858 @gracie5858

I am on 1 mg am and 1/2 mg pm. I will be celebrating my 9th year in November.

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@gracie5858 wow that’s really low. I’d love to get down to that level. Congratulations

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It bounces between 1 1/2 & two. Lately down to. 1 1/2. I can tell when levels are too high, I get really bad tremors!

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I’m on 1 mg twice a day and I take Cellcept also those are my only meds after 3 1/2 years right after my transplant I started with 26 different meds

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Profile picture for pgruetz @pgruetz

I’m on 1 mg twice a day and I take Cellcept also those are my only meds after 3 1/2 years right after my transplant I started with 26 different meds

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@pgruetz sounds like me. I was taking 37 pills the day I was released from mayo hospital and after almost 4 months, I take 7 + vitamins in the morning and 5 at night. I'll be happy when I'm only taking anti rejection pills.

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Profile picture for ErnestBrandt1980 @ernestbrandt1980

@pgruetz sounds like me. I was taking 37 pills the day I was released from mayo hospital and after almost 4 months, I take 7 + vitamins in the morning and 5 at night. I'll be happy when I'm only taking anti rejection pills.

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@ernestbrandt1980 Hi Ernest I had a liver transplant at Mayo AZ about 2.5 years ago. I had 24 meds a day to start and am down to 10 meds. Seven pills AM and pills 4 PM. Yeah. But one thing to double check if you want Ernest. I am sure it is fine but my transplant team forbids me from taking any vitamins. I don't recall the reason but that is a for sure. Probably case by case and you are fine but an email to them reconfirming you can take them might not hurt. Wishing you well. Best of luck.

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Profile picture for craigcraig @craigcraig

@ernestbrandt1980 Hi Ernest I had a liver transplant at Mayo AZ about 2.5 years ago. I had 24 meds a day to start and am down to 10 meds. Seven pills AM and pills 4 PM. Yeah. But one thing to double check if you want Ernest. I am sure it is fine but my transplant team forbids me from taking any vitamins. I don't recall the reason but that is a for sure. Probably case by case and you are fine but an email to them reconfirming you can take them might not hurt. Wishing you well. Best of luck.

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@craigcraig Thank you for the information. I did check with them about vitamins and they said it was ok to take my multi vitamin and an iron supplement. I take the iron for healthy red blood cells. I don't take anything before I get the ok from my team. So far they are really great about responding and answering any questions I have but this forum is great because we're experiencing transplant health firsthand. Thanks again

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