I'm down to .5mg prograf twice daily, 2 years post tp. I've really pushed to get down this low. My tacro level is aimed at 2-5.
Because of my particular situation, having had a live related donor with no rejection episodes, I'm extremely interested in eventually getting off immune suppressions or going as low as possible.
I know some people have gone off of them. I've read of trials where people do as little as 2mg per week but I don't know how they go about this.
Of course, I don't do anything without running it by my heptalogist, a great guy.
Do you think it's a good idea to suggest to so many people that there is life after Prograf? Do you think you might be encouraging people who might have a real need for Prograf to test the waters and wean themselves off? I don't believe you when you say you run EVERYTHING past your great guy MD. I think you are very interested in you. There may be some people who are able to be weaned but they are a definite minority and I don't think you should be encouraging potentially dangerous behavior else their blood may be on your hands.
I am among those people who are sensitive to both Prograf and Rapamune. Prograf has done a number on my kidneys, and I have tried to switch to Rapamune twice, each time requiring hospitalization because of the fact that it allowed the CMV in my system to go wild. I am currently 3+ years post-tx and I'm taking 0.5 mg Prograf bid (in addition to 750 mg Cellcept bid). I doubt I will ever go lower than this, especially since my kidneys have started to rebound from the Prograf. I would rather have a higher does of immune drugs in my system because it was an overactive immune system that brought me to the point of needing a liver transplant anyway (Primary Sclerosing Cholangitis) and I would love to not have it recur.
I understand they are trying to find a way to get transplant patients off the meds. Search for Dr. Tzakis with regard to that. I have heard rumors on other sites where they have actually done it, but I highly doubt this will see the light of day anytime soon, because the pharmaceutical companies would definitely not want to lose customers.
You should read this story of the girl in Australia who sparked some of the research. Her story is tragic with a good ending I guess, but something like this can't be repeated intentionally, or at least shouldn't (link --> http://www.dailymail.co.uk/health/article-510128/Miracle-girl-liver... )
We are still in the infancy over organ transplantation, when you take into consideration the things we knew 10 years ago, and compare them with the things we know now, imagine what we will know 10 years from now.
I think you're being too tough here. You said that she's lying about notifying her doctor. Just because someone would like to use less meds, that's their choice. I was able to get my prograf down to 1 mg. twice daily, from 3mg. and 2 mg.. I never asked, my doctor kept lessening the dose 'til the levels were good. Reading the post, it didn't make me want to go toss out the rest of my meds. As an adult I am able to decide my own future as are most of the rest of us on TC. As far as "I think you are very interested in you." Aren't we all. If not, we wouldn't have gone through the effort to see doctors, and eventually have a transplant. If I wasn't very interested in me, my death would be old news. I think you took this the wrong way.
Carlos, I agree with David -take a deep breath. I did not get the impression that we were being told to stop our Prograf. There may very well be a time when some of us can stop our meds, especially when you have a related donor. Medicine advances every day. We all have to do what is right for ourselves in conjunction with our transplant team. Good luck A. Front, let us know what happens. I am really curious. I am 14 months post liver transplant and on Prograf 3 mg twice daily. That is my only antirejection drug - everything else was D/C at 3 months.
I'm sorry if I gave anyone the wrong impression. This is not to suggest anyone do as I am doing.
Carlos is right, I wrote this thinking only of myself.
Most people with liver transplants will need to stay on immune suppressions for life.( I don't know anything about other transplants)
I heard a researcher who is currently doing work on why some people with liver transplants can go off I.S drugs say 20% of all liver transplant patients don't need the meds. That means 80% do need them.
However, because I had a live liver transplant with my daughter as my donor, I think I have a good chance of being in the 20% and am trying hard to find any information about anyone taking less than the .5mg BID I am currently taking.
And believe it or not, I do run everything by my doctor first. He has me do a lab 2 weeks after lowering my meds.
We are all responsible for our actions.
If someone decides to do something stupid because of what they read on the internet, well, then maybe they need a brain transplant? No blood on my hands but my own.
Darak, perhaps I was in a hurry to try to stem a discussion of “weaning” from immune suppressant drugs. That one is alive is an exhilarating feeling after a sentence of death. One feels he has sat with death at the chessboard and won. The first few years were an emotional roller coaster for me wondering if the magic would last.
May 5th will be 8 years since my liver graft. I remember my 24-mo ordeal waiting for Medicare to fund my transplant. I remember the faces at the UCLA support group. Those who came, waited and lived and those who didn't. And there were those who started playing with their doses, who tempted fate and lost. Liver grafts regenerate but kidney grafts don't so liver grafts may, ultimately, be easier to adapt to their host (chimerism) over time but this is all blue sky stuff
I have had an incident free recovery since 2003.I've had no susceptibility to opportunistic infections, no rejection episodes, no drama. I thank the 25-yo young lady whose constitution so matched mine that we live as one.
My sanitary habits are just what they were before I got sick. That is, I eat food from street vendors, forget to wash my hands from time and forget to take my pill sometimes. I have a three second rule for dropped food. So, I’m not the best role model but my objection was more to the point that some people might get over confident.
On rereading your letter I see you have had problems with Prograf so perhaps my letter was unnecessarily gruff. Now I see that the cat is out of the bag so I will say I have been taking a subclinical dose of Prograf for 3+ years with no side effects or rejection.
Darak: While reacting to Carlos I forgot to thank you for both the interesting link and about Dr. Tzakis.
Thank you for understanding it is information I'm after.
Unlike you, my liver was destroyed from hepatitis C ( HCV) meaning I'm better off on less immune suppressions as I still have HCV. Unfortunately transplantation doesn't get rid of the virus.
I am more cautious than I may sound. Also, livers aren't kidneys and there are success stories about people going off prograf who have had liver transplants.I don't know anything about other type of transplants.
All I'm looking for now is information.
Why is .5mg the lowest amount? Personally, I need less medication than most people even if its just aspirin.
If my tacro level goes above my target than what?I want to take the lowest amount needed for my body, which differs from the average.
And I don't advocate anyone to live life as I do.
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