Tacrolimus levels dropping every week. Please help

I had a renal transplant 5 years ago. My levels have been pretty decent and consistent with Creatnine at 1.2/1.3. About 3 weeks back, during my labs my creatnine went up to 1.4 and urea was at 32. My heamoglobin dropped to 12.7. Then i got my Tacro levels done and they were very low at 2.2. I got it redone the next day and it was at 3.4.
My doctor increased the dosage from 1mg/1.5 mg to 1.5/1.5 mg. A week later my creatnine was 1.3. I got my tests redone today based on his advice and my creatnine shot up to 1.5 and heamoglobin is at 12.4. Also my tacro level is at 2 despite the increase in dosage.
I am now worried. If anyone has gone through this, please help.

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  • KC, if you take your medications the way that you are supposed to, things should be okay. First of all Your creatnine level is okay. Mine is usually 1.2 to 1.5. Second, it will take some time for the prograf levels to build up in your system. For the last two months, my prograf levels were in the nines with no explanation at all. I just had a blood draw on the 7th and it was 3.6 and my creatnine level was 1.3. The fact of the matter is that everyone's prograf levels are different. My typical level is 3 to 5. Relax. If the doctors are concerned about something, they will change it again. I have had my transplant for going on 8 years, and I cannot tell you how many times they have changed my meds.

  • Hello KC,

    Tacrolimus levels fluctuate for a variety of reasons (metabolism, brand, ...,) however the 12 hour rule is the biggest mistake patients (and Tx teams) make trying to establish levels.  Blood work must be performed 12 hours from the last dose.  Sooner the FK level will be too high, too late too low.  When ingested Tacro levels spikes, as high as the 20's, slowly drifting down until the next dose. That responsibility for timing falls on you, as labs have that "get 'em in - get 'em out" attitude.

    Another possible cause is diet.  Everyone knows not to ingest grapefruit and other items, but why?  The compounds in it metabolism the Tacro quicker creating uneven levels( both too late and too early.)  Hydration is also a factor.  Too much water dilute Tacro in the system, too little the reverse, even though it it is fat soluble. Different technicians/labs and patient sensitivity can also affect DK levels.  Your Tx team will find the answer if the information is correct.

    Sticking to the  12 hour rule will be the best way to establish a base line for your Tx team to adjust your dose.  Oh ya, stress can also affect levels (raising metabolism.)  My own levels have moved from 2.9 to 12......6 -7 is considered normal....Whatever that is.

    • Hey Kidneyboy,

      Thanks a lot. Will try the 12 hour rule. I am a little concerned about the increase in Creatnine as well. Do you think its ok?

      • Again ....Creatinine levels are affected by everything and are used to identify trends over weeks.  Life with a Tx is a balance and sometimes a bumpy road.  Imagine after going through this a number of times how little your nerves will be affected.   

        • You've got it as far as both tacro and cr levels go. Depending on what I was eating, things either shot through me or hung around for a while - both affecting my tacro levels. 

          KC, Oh My Goodness have you been spoiled!!!!!!!! Cr. levels staying at 1.2/1.3 for years? OMGGGGG My Cr has never  been the same twice in a row. I've ranged from 1.33 about two years ago (my kidney tx was in 2002) to my current approximate baseline (1.7 - 1.88) and has in the past "shot" up to 2.5. I'm sorry, but going from 1.2 to 1.5 could simply be the difference between two different people working in the lab and an extra glass of water drunk before the lab draw. 

          Transplant results go up an ddown and down and up again. Don't worry, or even break a sweat until you see at least 3 labs over several months going consistently up (and by more than just 0.1 or 0.2). Be happy you have lots of hemoglobin (I'm lucky to get up to 10 with the chronic use of epo) too.

          Best of luck to you. Try to relax and talk to your team.

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