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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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  • 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

  • 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.

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    • I had a double lung transplant back in 96 and in 05. I too feel that we overfed with drugs. I am one that believes if you eat extremely healthy foods you will stay very healthy and reverse or improve your diabetic condition.  I too had to lower my drugs- doctors were not happy but I was happy and I am doing really well too.

    • Wow! That is amazing!

  • Thanks for the great read, @ Ono. and the rest of you with the great feed back!

     

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