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Prograf level

My tacrolimus  was revealed to be 18.2, about three times than my usual range around 5-6. This lab work was taken on Jan. 25. I have not had this high of a number before, and the rest of my labs seemed pretty much normal. I am not sure of the reason. The only major change has been my manner of getting nutrition. I am mostly fed through a tube which has two parts, one goes into the stomach and the other goes into the intestines. Due to some difficulty with my tube, I have had to go only feeding through my intestines rather than through my stomach as I usually do. Does anyone know if not taking in anything through the stomach can make one absorb more of the tacrolimus? I made my transplant team in Florida aware, and they contacted me to ask a few questions, but then in the email, it was mentioned that the transplant group in Florida may not be able to manage my case any longer unless I commit to going down there once a year. I answered the questions and responded that I could not afford a trip down to Florida. I did not hear from anyone today, and it concerns me because I do not know whether this higher level of tacrolimus could be toxic. I thought my transplant team would be willing to work with my local doctors, especially as my type of multivisceral transplant surgery has not been performed here in Kentucky, as they have in the past, but something has changed. That was why I never got a transplant doctor here locally. I explained the situation to my nutritionisit today, and he will be trying to help me to get in with one. I am just wondering how concerned  about the higher tacrolimus level I should be.  I wish you all the best. 

 

Warm regards,

Bobbiejo

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Replies

  • Bobbiejo,

       Those numbers are really high.  If I were you I'd be calling my transplant team right away and ask them to review your labs for possible medication adjustment.  Have you made any changes to how much magnesium you are taking?  That also affects the Tac levels.

    Mark

    • Thanks for the concern. One problem I have at the moment is that I do not have a transplant team. I was consulting with a team in Florida where I had the transplant, but right when I told them about my high tacrolimus levels, it suddenly told me it could no longer help me because I could not afford to travel down there once a year (I live in Kentucky) despite having helped me in the past by giving me my monthly lab orders for example. A nutritionist I have has helped me to get in to see a local transplant doctor for the first time since my transplant. This occurs on the 21st, so fortunately it is not too far away. My primary care physician has helped me some by decreasing the amount of tacrolimus I take by one, so that I only take three in the morning and two at night instead of three twice a day. This has helped some because the last labs I had showed my tacrolimus level had decreased to 11 something, so about twice what my usual level was instead of three times as high. 

      As far as the cause, the only thing that has really changed is how I get my nutrition. Due to some problems with my feeding tube site, I have switched from feeding directly into the stomach to feeding directly into the small bowel. I am wondering if perhaps I am absorbing the tacrolimus more because of my stomach mainly remaining empty except for a few medications I have to take by mouth. I am not sure though. I do not think I have made any changes in my magnesium intake because I am still using the same tube feeding formula and have not changed my vitamin intake. I appreciate though you mentioning this. 

      I hope that you are well and enjoying your week. I send you a bundle of grateful hugs. 

      Warm regards,
      Bobbiejo

       

       

       

  • That's sounds really high. I am on the opposite end of the scale. I take 1/2 mg twice a day and sometimes it just registers < 2. But I have only one organ transplanted. Sorry to hear about your doctor problems. :-( I am sure you will get it all straightened out. Good luck, and good heath to you and all. 

    • Thank you for the encouragement. It is tremendously appreciated. At least now I do have my first appointment with a local transplant doctor on Feb. 21. It is probably best that this has happened in the end. I hope you are enjoying good health and finding new reasons to smile and hope each day. 

      Warm regards,
      Bobbiejo

      • I am very pleased to hear that you have an appointment with a tx doc and am most eager to hear what s/he has to say on the 21st!  Please let us know what you learn.

  • Make sure you get labs for creatinine, GFR, albumin, and any other kidney function tests I can’t remember at the moment. It’s possible that high of a tacrolimus level could chew through your kidneys very quickly.

    • I appreciate you mentioning checking kidney function. That was the first thing that came to mind when I first saw that my tacrolimus number was high. I emphasized this to the PCP, and he is checking this as well when I have my tacrolimus checked. I hope that you are having a good week.

      Warm regards,
      Bobbiejo 

  • That level is toxic but it sounds like it’s being addressed and reducing dose. I would think the Tacro level would be lowered much more though. What center in Florida was it? I live in Florida and can’t believe any of the teams here would not be working with Drs where you live. I have gastroparesis and while in the hospital they gave me a drug that increases the Tacro level so, my dose was reduced to more than half of what I had been taking. Can’t think of what it was now. Janet Weinstein

    • Hi Janet,  I was reading your reply and saw that you live in Florida. I live in bonita Springs and just started to see  Nephorologist in Fort Myers.  I had a kidney transplant 3 years ago at Tampa General Hospital.  I am struggling with tremors and weakness in my legs.  I am 72 and understand that my age has slowed me down. Was wondering what meds you are taking as I read how active you are. ( I admire your ambition ) thank you for any insight .

      Mary Bachura

    • Thank you for responding. I was at at first working with a transplant team at the University of Miami/Jackson of Memorial hospital where my surgery took place, but after a few years, my surgeon moved to Cleveland Clinic Florida, and I sort of followed so that the same surgeon could manage my care although I have never actually been to Cleveland Clinic Florida. I kept in contact through email and phone calls. I have not heard anything back from it since I emailed saying I could not afford to visit once a year. 

      I think my PCP is only going slowly with lowering the dosage because he is not a transplant doctor, but he can see that the level is too high, and he wants to help me some until I can see and get help from a local transplant doctor. Fortunately, I finally have an appointment to see one on Feb. 21. I wish you well. 

      Warm regards,
      Bobbiejo

       

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