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

Posted by knobhead @knobhead, 1 day ago

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 - Good Morning and Welcome to Connect! With 7 years of transplant experience, I can understand your concern about the future with your transplanted organ. As for myself, I celebrated my 17th year with my liver and kidney transplant (Mayo Rochester 2009). I have been taking tacrolimus and cellcept during the entire time, and continue to do so with great success. Over time it is normal for the dosage to decrease, as it has for me. Everyone has different dosage requirements and our transplant team will continue to monitor and make adjustments as needed. As we age, our bodies naturally will require a smaller dosage amount.

Knobhead, what organ did you receive? Are you having any symptoms that are concerning to you?

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Profile picture for Rosemary, Volunteer Mentor @rosemarya

@knobhead - Good Morning and Welcome to Connect! With 7 years of transplant experience, I can understand your concern about the future with your transplanted organ. As for myself, I celebrated my 17th year with my liver and kidney transplant (Mayo Rochester 2009). I have been taking tacrolimus and cellcept during the entire time, and continue to do so with great success. Over time it is normal for the dosage to decrease, as it has for me. Everyone has different dosage requirements and our transplant team will continue to monitor and make adjustments as needed. As we age, our bodies naturally will require a smaller dosage amount.

Knobhead, what organ did you receive? Are you having any symptoms that are concerning to you?

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@rosemarya I’m very well on my current dose but as you will probably know the drug affects kidney function and mine is pretty poor. I just wondered if anyone was in a lower dose than me as if that is the case I’d like to discuss the option of reducing my dose to protect my kidneys. What dose are you in after all that time?

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I’m currently on 1.5mg total each day 1mg am, .5 in pm. This being said, the rate that the body metabolizes tacrolimus varies significantly. Even at this relatively low dose, my tacrolimus level can be as high as 8 or as low as 4 (which may be too low).

And, obviously, check with your team, maybe they’ll recommend getting your blood drawn more frequently to monitor more closely. I’m 10mos post transplant, so still get labs every two weeks, so they’re keeping an eye on me still.

Regards

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Profile picture for Curses @kmlowe

I’m currently on 1.5mg total each day 1mg am, .5 in pm. This being said, the rate that the body metabolizes tacrolimus varies significantly. Even at this relatively low dose, my tacrolimus level can be as high as 8 or as low as 4 (which may be too low).

And, obviously, check with your team, maybe they’ll recommend getting your blood drawn more frequently to monitor more closely. I’m 10mos post transplant, so still get labs every two weeks, so they’re keeping an eye on me still.

Regards

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@kmlowe Had a liver transplant 2.5 years ago. They started me on about 6 mg per day but I am now down to 1 mg per day (or on occasion 1.5 mg per day). Done .5 am and .5 pm. I don't think it can go lower than that as I think it metabolizes in about 12 hours so you would need the minimum of .5 twice a day about 12 hrs apart. Agree with the advice above and chat with them but go with whatever your care team deams. Best of luck.

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Profile picture for Curses @kmlowe

I’m currently on 1.5mg total each day 1mg am, .5 in pm. This being said, the rate that the body metabolizes tacrolimus varies significantly. Even at this relatively low dose, my tacrolimus level can be as high as 8 or as low as 4 (which may be too low).

And, obviously, check with your team, maybe they’ll recommend getting your blood drawn more frequently to monitor more closely. I’m 10mos post transplant, so still get labs every two weeks, so they’re keeping an eye on me still.

Regards

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@kmlowe That’s pretty low so they can obviously reduce down further. I guess it depends on Tac levels when I get them tested every 6 months. I think mine is steady around 5. It probably depends on your age, weight etc too. Thanks

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Profile picture for craigcraig @craigcraig

@kmlowe Had a liver transplant 2.5 years ago. They started me on about 6 mg per day but I am now down to 1 mg per day (or on occasion 1.5 mg per day). Done .5 am and .5 pm. I don't think it can go lower than that as I think it metabolizes in about 12 hours so you would need the minimum of .5 twice a day about 12 hrs apart. Agree with the advice above and chat with them but go with whatever your care team deams. Best of luck.

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@craigcraig That’s very low. Are you still on Mycophenolate as well?

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Hi. I am an older big guy a little over 200 lbs.. I do blood work for Mayo once per month. My TAC level ranges from 3 (they always increase my dose when under 4) up to almost 7. They reduced from 6 mg per day down to 1 gradually over almost 3 years now. I take 10 meds but TAC is the only immunosuppressant. They may reduce yours over time also ? Good luck.

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