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Rencently , I hear that some of my friends who did liver transpantion over 8 years , under the Doctor instruction .it is more the one or two years to stop Prograp untill now .Do you konw if anyfriend who stop Prograf without any problem?without any rejection ? what is you opinion? What is doctor opinion?thanks for you join in to discussionbest regardsluoming form Beijing China

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  • It's great to be on the lowest dose of immune therapy possible, or off Meds altogether, but I'd really encourage people to do it with your Transplant Dr's guidance, regular Lab work, and VERY slowly. It is so easy to get into trouble.
  • I'd happily like to say I have taken no prograf since Feb 2 2016. Today is May 19,2017 and I'm doing great !

    Its nice to be med-free.
    • You are a suppermen ,be carefull  .God bless you keep in touch

      • Thanks, but actually, that'd be I'm a super woman !

  • HI Luoming,

    Yes, I was able to stop Prograf after 4 years and then able to stop Cyclosporine as well. But I did not do this on my own, but under the care of my Transplant Team.  I started at my Transplant on Prograf, Mycophenolate, and Prednisone.

    The Prednisone was stopped at 4 months post Transplant.  I had a lot of problems with side effects with the Prograf and eventually it was changed to Cyclosporine and I was on it in combination with Mycophenolate.

    Then just over 2 years ago, my Dr's started a year long process of weaning me off the Cyclosporine and I am now just on 1 drug, Mycophenolate.  I had many factors in my favour to be able to do this.  I was 6 years out when they started the weaning process and I have never had an episode of rejection. I am an older female (early 60"s) and apparently that is a factor in making it successful.  I have taken my medications religiously, and my blood work has been good, and is now even better on just 1 Med.

    I would DEFINITELY NOT suggest anyone try this on their own.  At my last check up I said, I imagine that you have quite a few patients on monotherapy now, and they said, no they actually didn't as there were not many who met the criteria.  

    I consider myself very lucky, and feel better on this dose, and if you think you might also meet the criteria, I would suggest discussing with your team.  The weaning down to 1 drug took a year with lots more Labs, but I have been lucky.  

    I am also aware that things could change at any time and another drug may need to be added again.

    Diane

    • many thanks for your reply .

  • Most anti-rejection protocols use two or more meds, not JUST Prograf.  For instance, I started with Myfortic, Prograf, and prednisone.  I was weaned off of prednisone, monitored for liver changes, and the prograf reduced to only 1 mg/day.  There are some protocol for "mono-therapy" on Myfortic only.  I hope to get off of prograf entirely, but my Docs are not so inclined and I have to admit, that my kidneys are thankfully not showing any problems.

  • I came off Prograf 3 years ago because of challenging side effects, and was put on Cyclosporine instead. I was also on mycophenolate. This past year I was weaned off the cycosporine, and I'm now just on monotherapy with mycophenolate. I'm 7 years post liver transplant.
    Diane
  • You know, liver txs include bile duct as well.  I knew the liver tissue regenerated, but I don't know about the ducts.  Maybe so.

    • Hmm , I didn't realize that. Very good information Steve
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