Forum Style

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  

You need to be a member of TransplantFriends.com to add comments!

Join TransplantFriends.com

Email me when people reply –

Replies

  • 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. 

    • Aw, Maverick. A few of these responses were written in an insensitive way, but I hope you don't stop coming here. Everyone is an individual and experiences things differently. Though your experience doesn't seem to be the "norm" here, I appreciate that you shared. I think that the bottom line is that we have all been through (or in some cases, are going through) a pretty big ordeal & people are scared. That doesn't make your experience any less than what it is. For me, just 5/mos post-transplant, I will say that I intend to follow my doctor's advice. I was on 20/mg of Prograff per day, and began having some pretty extreme side effects beginning in month 4. This week I met with the transplant team, and they are trying out lowering the dosage to 14/mg per day (7 in the a.m. and 7 in the p.m.) We're going to monitor my blood work and adapt as necessary. I already feel better. Whatever you decide to do regarding the forum, I wish you all positives and congratulations on 19/years post-transplant. That's quite something indeed! :)

This reply was deleted.

Facebook & instagram

TransplantBuddies & Friends Facebook Group

TransplantBuddies & Friends

Transplant Stories

Members Stories

Twitter

COTA

Lung Transplant Foundation

Cystic Fibrosis.com

        Organ Donation Surprising Facts

Planetary Biosciences for Cystic Fibrosis

Please Donate for CF Patients