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Prograf Reduction

I saw my new transplant doctors at the Dignity Transplant Center in Phoenix Arizona a few days ago for the second time. They said I could start taking 1/2 Mg of Prograf per day down from 1/2 Mg twice per day. The last three months I have skipped one every other morning without any problems. I actually feel a bit better. This is the first change in my Prograf in over 10 years. Since I am approaching 19 years my body seems to have accepted the liver more so less medicine is needed. However I am monitoring my vitals regularly t make sure this all works out in a good way.

Wishing good health to all,

Mav  

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Replies

  • Hello I am new to this site.I also had my liver transplant may will be 20 years.I take 1 Mg a day of prograf 6 days a week.My GGT level has been running high this month it was 380 lower then last month.Had a MRI done yesterday waiting now to see what they say.Have you had any problems with your running high.

  • Hi Mav

    What are you taking besides your medications? 

    We all have different experiences with our transplants. So happy to hear you are doing well and visit us often by sharing what works for you.

  • It will be 5 years since my living donor liver translant on Dec. 18, 2018. My TX lowered my Prograf from 2 - 1mg in the morning and 1 - 1mg in the evening down to 2 - .5mg in the morning and 1 - .5mg in the evening about 8 weeks ago. I have been doing fine and feel somewhat better. Congrats on you doing so well. It is so amazing to me what doctors can do these days. I really feel that God works through these amazing people.

  • You need to always obey your doctor. Especially on your medication. Prograf is the most imporant ant-rejection medication. You have not made a wise decision. I would rather a little problem than have problems that could not be so good. 

  • Here are my two cents.

    I learned from some folks on this board that someone taped down the med under the doctor’s supervision because the patient insisted. After that, unreversed rejection happened. So, I don’t want to take that risk. I almost died while I was on dialysis and waited for the transplant. 

    Here are someone’s quotes.

    Thank God and my donor for another day. Anything else is irrelevant.

    take care. 

  • Unfortunately, your body will never "accept" your transplanted liver. It's foreign DNA, and always will be.  The only way to forego anti-rejection medication is to have an exact DNA match, which only would exist if you were donating to yourself, or an organ was grown from your stem cells.  This is impossible at this time, even for livers. I would urge you to follow doctor's orders.  And you likely wouldn't see many changes in your vitals until it's too late.

     

    Best to you!

  • Thanks for the informative post.  It helps tremendously as a newly transplanted pt.  

    There are always obstacles with every disease.  Kidneyboy, I am sorry you are having issues.  

    Hope is all we have.

    • Hi Kim,

      If I seemed rude to Maverick, I apologize, but I take issue with anyone who thinks the body will "accept" an organ as it's own, in 5, 10, or 20 years. There is hope that research will lessen or eliminate the need for immune suppressant meds but is a long way off. Maverick's dose of Prograf is so low, I doubt any side effects are being felt  There IS no replacement for blood work, which will detect any rejection/issue long before one can "feel" it. 

      My losing my Tx was, in part, to the Tx team lowering my Prograf, after 12 years. 

  • Hi Maverick,

    Perhaps you haven't been exposed to a source of infection or a virus, as of yet, but it will happen.  Does doing it all over again sound like fun? I have and it isn't.  If you're feeling lucky, buy a lottery ticket

  • Well, if no one cares about my posts I will stop coming here. I don't have timne to waste. 

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