My new nephrologist wants to decrease my Tacrolimus dose.

@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!

@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.
https://connect.mayoclinic.org/discussion/copd-group-introduce-yourself-and-connect-with-others/
@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

Hello All
I have been recommended to keep the Tacrolimus levels between 4 - 6, which in my case will cause reduction in Tacrolimus dosage From 3x.5mg to 2x.5 mg ( after 5 years of Transplant) as I have had some body weight loss.
Question in my mind after reducing Tacrolimus the WBC count will rise ...can someone share their experience on how high did the WBC count rise. Reason is high WBC count can cause an adverse impact on the Transplanted Kidney.
Thanks

@l0lag0lag0b3 - I have not experienced any elevation in my WBC count when my Tacrolimus dosage has been reduced. And, over time my trough level goal has been reduced from what was my during my earlier post transplant years. I am approaching 16 years post liver and kidney transplant, and I think that my current recommended Tac trough goal is same as
yours.
To answer your question about possible raised WBC - My WBC level has remained consistent over the years, and has not been affected when my Tacrolimus dosage has been reduced. However, I want to add theat whenever my Tacrolimus dosage has been reduced, it has been at only with 0.5 mg daily reduction. And my labs are repeated within 2 weeks to be sure that my liver and kidney are not adversely affected!
BTW - My experience is that it is okay for the tacrolimus level out of the specified range because of our individual reactions and health conditions. My transplant team looks at pattern over time alongside my overall health and lab results.

I hope that you have success with lowering the Tacrolimus if that is what your kidney doctor recommends. Is your transplant team involved? How will any change in medication be monitored?

Thanks Rosemary
Well as far as the transplant center is involved, I went for my 5year visit for final check out of DSA and then it was a good bye .. I am ok and can live with their decision understandably they do a large amount of transplants every year.
Yes you for fortunate to have access to a good team.
Let's see how it goes, I am reading case studies..to improve my comfort level. .. Thanks again.

The original post in 2022 had to do with Tacrolimus use for MCD. I’m not sure what that is and I dislike the use of acronyms and abbreviations. The remainder of the discussion focused on Tacrolimus use as an immune suppression in transplants. That I can relate to!

I’m going on 20 years post pancreas transplant. I’ve been on Tacrolimus ever since. Initially there were SO many labs and dose changes! There is indeed a lab to check the Tacrolimus level. It is also known as FK506. At this point I get that done about every 3 - 6 months. My dose hasn’t changed in a LONG time. I had the transplant in the hopes of saving my kidneys from brittle diabetes. So far, so good. I have chronic kidney disease (CKD stage 4). My nephrologist orders the Tacrolimus level lab and reviews the results. (I no longer remember my target level and have to look it up each time the lab is done.) The only side effects I remember were really mild hand tremors, vivid & funky dreams and thinning hair (I had that anyways). I had so many dose changes at first (up and down) the side effects seemed unrelated to dose changes. The side effects ALL went away after the first few months after transplant. I use .5 mg capsules in the event there are any dose changes. I just have to add or delete capsules. My current dose is 1.5 mg in the morning (3 capsules) and 1 mg in the evening (2 capsules). That’s my story, sticking to it.

One interesting side note. I have read that research shows some benefits of Tacrolimus for kidney conditions?! Then again there is such a thing as damage to the kidneys caused by Tacrolimus toxicity. This is true. I have it, confirmed by kidney biopsy.

@l0lag0lag0b3 I haven’t experienced any change in white count (WBC) related to Tacrolimus. Initially I was also on Mycophenolate (Cellcept) and it was thought that it tanked the white count (WBC). I was switched to Sirolimus (Rapamune). Eventually it was dropped (when I had an incisional hernia repair surgery) and was never replaced with anything else.