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Just to update my Creatinine unexpectedly rose to 1.83 after being around 1.3 for close to a year. I just got my Tacrolimus blood level back & it's 10.6 on 10mg Astagraf which is much too high for 20 months out. I'm kind of upset with my Transplant team because my Creatinine rose to 1.42 in August from 1.24 in March on 11mg of Astagraf. They only reduced me to 10mg Astagraf in August but it's clear they should've gone lower.

So now my local nephrologist said reduce to 8mg Astagraf but my Transplant team said go down to 6mg so I'm splitting the difference & going with 7mg! My nephrologist said just go with 7. I'm in St.Louis but I had my transplant at University of Illinois at Chicago. They get patients from all over the country so it's not that unusual.

How low do you all think I should reduce my Astagraf to? Also what is the appropriate Tacrolimus blood level when you're 20 months out?

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  • Hey, I had the same issue. mine TAC was 11 and my Creatnine went from 1.2. 1.6. I was taking 2 mg tacograph morning & evening . 

    Now My Doctor reduced from 2mg to 1.5 Morning & Evening and my TAC came to 5 now and creatinine to 1.4 last checked.

  • I highly recommend taking the advice of your transplant team together with your nephrologist. Are they not communicating with each other about this issue?  Making your own decision on levels of Tacrolimus is a foolish move.

  • I don't know about Astagraf, but I would follow what your TX team suggested.

    My Tac levels should be between 5 and 7.

  • I'm so sorry to hear this, I have been so lucky at Stanford. I wouldn't try to self-prescribe, but I would be bugging the c×!@ out of the transplant team. This is their responsibility. Remember, sqeaky wheel gets the grease!!
  • Neal:

    Who controls your meds - the Nephrologist or a transplant team.  I'm with you.  There is a time in our life  when we have to make a judgement call regardless of the situation.  I would have done exactly what you did - split to balance the amount.  

  • Neal,

      If my Tacrolimus level was that high I'd probably not be able to walk.  I would certainly ask your transplant team as soon as possible.  I'm 28 months out and they keep my level at around 4.5 all the time.  Just under normal.  I was having so much foot pain that they decided to lower it so it's right about there now.  I'm taking 3 mg of Prograf morning and 2 evening.  Also recently had MyFortic reduced from 360 mg twice a day to 180 mg twice a day.  If my labs come back stable next month they are going to discontinue the MyFortic as well.  I hope you will be able to reduce yours.  There are so many side effects that can come from high Tacroliumus levels.  But don't make the decision to lower on your own.  You must trust your transplant team to guide you.  They may have their reasons.

    Mark
    Liver Transplant 7-2015

    • As I stated, everyone is different.  I take 1.5 mg AM and 1.0 mg PM.  This keeps my blood level around 6.  Some are more sensitive to it than others.  After a decade on Myfortic, I was shocked when it was removed from my medication protocol.  It's been two and a half years since that happened with no plans to restart it.

  • I don’t think that you should ask that question here. Do you not trust your transplant team ?
  • Great News!  I thought since your creatinine wasn't steadily rising (poss. sign of rejection,) that the issue was medication.  Is your local nephrologist a Tx neph. or consults with your team (better if everyone is on the same page?)

    There is NO normal FK (tacrolimus) level as everyone is different, though many are in the range between 6 - 8 .  Higher levels can affect Creatinine levels too.  I do not have experience with Astagraf (time released Prograf) and do not know if blood levels/protocols should be the same.  My Tx nephrologist has made adjustments and requested blood work weekly, whenever doses have changed.  

    Again, great news and I hope you enjoy many, many years in good health!

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