My new nephrologist wants to decrease my Tacrolimus dose.

Posted by codered032 @codered032, Feb 25, 2022

My new nephrologist is considering reducing my Tacrolimus from 3mg twice daily to 2mg twice daily. I have been taking Tac for about 8mos. So far it’s working. The thought of decreasing my medication is anxiety provoking. This is the only medication I am currently taking for MCD. My fear is coming out of remission and having to start over again with prednisone. Are there side effects with reducing Tacrolimus? I have not been able to find information on Tacrolimus side effects related to MCD. Most of the the information about side effects that I have found are transplant related symptoms. Please share any information related to your experience with Tacrolimus. What side effects may be related to reducing Tacrolimus? Thank you for sharing.

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@codered032, I think @rosemarya @gaylea1 @jerrynord @coastalgirl may have some experience with tacrolimus they could share with you. I'm not sure.

Have you spoken with your nephrologist about your anxiety in changing the medication and fear of changing something that is working? Did s/he explain why they believe changing the dosage would be beneficial for you? I think if you talk about your concerns, your nephrologist would be able to give you a clear explanation of the goals of treatment.


Hi . I was on 6mg tac for 2 months and was reduced to 4mg . Then reduced to 3.5mg and yesterday was put back on to 4 mg again .
There is test called the Tacrolimus level . That's crucial to know how much tac in your system. Too much or too little packs up the kidney.
After 8 months post transplant your tac level should be between 5 -15 . So check your last tacrolimus level .


I was going to ask my doctor about tacrolimus, however I already have Stage 3 chronic kidney disease as well as COPD and alergic to many meds so guess I am out of luck!


I was going to ask my doctor about tacrolimus, however I already have Stage 3 chronic kidney disease as well as COPD and alergic to many meds so guess I am out of luck!

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@kit324miss, I want to welcome you to Mayo Connect. I am a liver and kidney transplant recipient. I have been taking tacrolimus for nearly 13 years as one of my antirejection meds. I have not experienced any difficulties with taking it. My labs are scheduled on a routine schedule that my doctors have assigned me. These labs show how my system is doing, and there is a special tacrolimus test as @nimalw has already shared.

I did not experience CKD because my kidney failure was acute and related to my liver failure. If there a particular reason that you want to ask your doctor about taking tacrolimus, I would encourage you to do so. Each one of us is different, and our bodies react differently. Your doctor should be able to discuss the pros and cons along with your allergy concerns.
@kit324miss, Did you see the new COPD Group? I happy to share the link with you and I invite you to introduce yourself, meet others, and share your questions and your experiences.
@codered032, My tacrolimus dosage has been adjusted according to my lab results several times in the past. When the adjustments were made, it was 0.5 mg (2x day) change. I could feel an almost immediate relief from the trembles, anxiety, and lack of concentration that 'told' me that my level was too high. Always established with labs. On the other hand, if my tacrolimus dose is upped by 0.5mg(2x day) my shakiness, anxiety, lack of concentration are tell tale signs and I immediately contact my transplant nurse.

There is a level of tacrolimus that is suggested for transplant patients, and that is a guide. However, individual trough levels can vary, depending on the individual, determined by the transplant team. The goal is not too high, not too low, but just the right amount to do what your body needs.

@codered032, What is the reason that your new nephrologist wants to change dose? Will he be doing a follow-up lab to see if it is working for you?
@nimalw, Your level/dose will likely need adjusting as you move further out from transplant.
@kit324miss, When will you be seeing your doctor? Are you currently taking tacrolimus, or is there a reason why you want to ask him about it?


Hi Rosemary. So you are on 1mg Tac a day and still feel tremors ???? I am on 4mg a day I hardly feel it can tolerate though it interferes with my sleep . Other than that it's fine. Like you said we are different and reactions differ too

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