What is your average tacrolimus level? Hoping to reduce side effects

Posted by s7r3welty @s7r3welty, Jan 30 1:14pm

What is your average trough level on tacrolimus for heart transplant patients. 1 yr. or more out from the transplant.
Mine is at 9.6 and I am 5 yrs out. I was told that the dosage would drop at the five year mark. They do not want to drop it anymore. I was hoping to get rid of some these side effects.

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Colleen Young, Connect Director | @colleenyoung | Feb 14 8:45pm

In reply to @nat1742 "I am 1 1/2 years heart transplant. My trough level target is now 7 I am..." + (show)

@nat1742, congrats on the new heart. How are you doing now?

nat1742 | @nat1742 | Feb 15 7:59am

In reply to @rosemarya "Hi, @nat1742, and Welcome to Connect! I see that you have shared information about your trough..." + (show)

I have had a pretty good experience. I had bumps in the road, but they were explainable and corrected by adjusting doses and removing a medication.

I did not like the high tacrolimus dosages the first year, They kept me at a 10 or 11 trough level. The tac symptoms did not kick in until I was about 6 months post HTX. I had neuropathy in my feet and joint pain in various places and was so tired, not to mention seriously concerned for my kidney. Now that I am 1 and 1/2 years out they are letting me go lower to a 7 trough. My kidney levels did improve a bit at a 7, and are as improved as they can be while being on tacrolimus period. I think I will go even lower in a few more years.

It is very hard, I feel acceptance for me and not worrying about tomorrow and living for today is the best thing I can do for myself. After all, I won the organ lottery and I am living today because of a the gift of time and life I was given. Believe me when I was having bad times, that was not in the forefront of my mind.
Sending best wishes to all!