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From Prograf to Everolimus

LIver TX 4-years ago.  Was on Prograf, Myfortic, and Pred until last January when Pred was stopped.  Now at the 4-year mark, the Docs are taking me off of Prograf and starting Everolimus.

The program is:

     1. Do a protein in the urine test.

     2. If all goes well, start Everolimus and then stop Prograf after 4-days later.

     3.  I will be VERY immune suppressed for 2-weeks.

     4.  Then a number of follow-up blood labs to be sure the transition has no issues.

My liver is "pristine" according to the Docs (all normal test results).  Kidneys are likewise, but elevated on the uppper end of normal for creatine.  Docs expressed concern for long term kindey health since I'm young (58 years old!).  The side effects of Everolimus are out there to be read, but are all "possible" side effects.  

What should I expect?

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  • I've been taking sirolimus (the other Mtor inhibitor) for more than a year now (3mg q.d.). For me, the side effects are nothing compared to Tac, but as you know, everyone reacts differently. I did get minor mouth sores initially, but they stopped after 6 months. I take prednisone as my other immunosuppressant (5mg q.d.), which my tx nephro tells me helps with the mouth sores. FYI: I was switched from cellcept to prednisone due to a dangerously low WBC count, not mouth sores.

    In my opinion, it's worth trying. I only took Tac for 6 months, but I definitely feel better on Sirolimus. Another plus is you only take it once per day.

    It will probably increase your cholesterol levels though...


    • Mouth sores for 6 months!  Dang.  Not looking forward to that.  

  • HI Steve, well you were right they are starting me on the Everolimus starting next week. I guess the one side effect I'm worried about is the mouth sores. Did that happen to you?
    I enjoyed our conversation very much, please call anytime, I love picking your brain! So much info in there,
    • I have to have a creatinie clearance and protein test before the decision if final on switching.  I had collected the sample but the lab messed it up.  I repeat it on Monday.  

      • I passed my Creatine test with a 1.34 lowest it's been in a long time! So they want me to start the Everolimus, Zortress, lower the Prograf, discontinue the Cellcept and the Prednisone! And hopefully stop the insulin too! So I would only have to take the 2 drugs and calcium.
        I meant to ask you, do let you take any other vitamins?
        How much protein do you take in daily? Does it help with the fatigue if you get more?
  • Current program:     Twice per day:  720 mg Myfortic & 1 mg Prograf

    • Yikes not comforting. I'm on 2 mg program bid for two years now. I thought maybe you were much higher. Good luck with the change
      • The decision to change was preventative to protect the kidneys long term. No because of any current issue. My kidneys numbers are still pretty good. I guess this is just what they do.
  • What kind of program level were you on? I.e how many mg and how often
  • Interesting! My kidneys are suffering from prograf, as well. I have an appointment soon, and I expect my coordinators to switch up my meds. I can imagine they will want me on Everolimus. My friend had a liver transplant and they switched him from Prograf to Everolimus and had horrible mouth sores because his counts were so low. I'm not sure if this is normal though. Of course, this is just what I've seen, not experienced. I'm sure, as you know, with any med crappy side effects often ensue.
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