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Prograf and weed?

Hello,I'm Jessica, I'm 19 about to turn 20 years old. I received my liver transplant when I was 3 years old so I've been with my organ for about 17 years. I had a bit of a rejection stage at the very beginning but am 100% better now. I was prescribed Prograf and had been taking it basically all my life. For a while it seemed to work and really have an effect on me. If I stopped taking it for a while my blood levels would fluctuate and thus my doctors would change the dosage of my medicine. However, as I get older I started noticing my body react differently to the Prograf. I began having constant headaches and began having really bad hand trembles. I went to see a neurologist and he confirmed it was the Prograf I was taking. My gastro doctor tried to deny it by saying my dosage was too low but I noticed otherwise. They got so bad that I wouldn't even be able to take notes in class while the trembling occurred. On the occasional days that I would forget to take my pills, the tremblings would be very slight if any at all. I stopped taking the medicine without consulting my doctor ( yes, now I understand how risky that was but in my despair to try and my way out of the hand trembling situation, that was my immediate though. During that time I would still get called in to get blood work and my doctor would always call back saying my results were great. He didn't know I had stopped my meds at this point and that instead I was smoking marijuana. Could marijuana be the new way of healing patients with liver transplants and or other transplants?

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  • In a week I will post for my 18th anniversary of my liver transplant. I recently read an article stating that marijuana seems to actually protect the liver from Hep-C and HIV. However I would never recommend stopping Prograf on your own. My doctors have told me after a year that rejection usually starts if not sooner. Sometimes that cannot be reversed.

    I shake also and did have a hereditary tremor prior to the transplant. I take Valium and have since my transplant. I insisted because of course my doctors didn't want to do that. I said it was a quality of life decision for me. In retrospect it has not seemed to have done any damage but a lot of help. I still have some tremors but manageable. 

    In all my investigation and info on liver transplants I have never heard of this being done successfully. Good luck and good health to all. 

  • Jessica - As every one else says, if you stop Prograf, you will most likely lose the organ, maybe your life. There is a new drug approved for kidney transplant that seems to be much less toxic, called Belatacept. I would ask about changing to that.

    As far as weed goes, there is a woman researcher at Temple U. who has been granted a patent for using CBDs and THC against LUNG tranplant rejection. Rebecca Robinson. Wouldn't surprise me if some day it became a treatment, but unproven for now.

  • Hi Jessica,

    I am just over 4 months liver TX. I have had major issues with the hand tremors, it did get better through time. I was told when I complained to the tx team to get used to it and was pointed out that I would be on the tac the rest of my life (knowing this prior to transplant). The tremors have their moments but I have gotten better or better dealing with it. I would recommend as every other tx recipient will tell you, stay on your meds no matter what.

    On to your second item of concern, I am 53 years old and grew up in the mid 70's and 80's. There was a ton, literately a ton of marijuana use. I asked about casual use and the only thing pointed out was some street pot can be moldy. They didn't recommend using but did tell me what to look for as the mold could cause an infection in your lungs. So that said, my occasional use does help with tremors and some hip pain I developed post transplant. I don't smoke every day so I am no Spiccoli; (google him if you have to), just use to relax and take the edge off from time to time. I got to feel it is better than drinking or taking anti anxiety meds.

    Good Luck and Best Wishes,

    Tom S

  • Jessica,

    please don't stop medications by yourself.  I had my first kidney transplant at the age of 14.  my new kidney at first plug in was working perfectly.  Then at some time when I was 19 I felt fed up going each and every time to hospital I was taking medications on and off and started to smoke loads.

    everything was going fine till the chronic rejection started

    what I didn't know is as the bomb start there was no come back.  all this because I was young and didn't think of consequences.

    now I am at my second transplant but when I look back it could be avoided.

    take care God bless

  • Hi Jessica, I hope you are o.k. , you have a support team here .
  • I do not understand Jessica- when you go for lab work don't they test your Prograf serum level?

  • Hello Jessica,

    I would not stop taking my meds for any reason!  If the side effects from Prograf are too unbearable, you should work with your Tx team to switch to another medication, rather than "rolling the dice" with your life as the wager.  Perhaps having taken it for so long there is less need for it now.  Let them be the judge.  If you are feeling lucky....buy a lottery ticket.

  • http://nypost.com/2017/04/24/man-who-was-denied-lung-transplant-ove...

    Man who was denied lung transplant over marijuana use dies
    A Utah man who initially was denied a life-saving lung transplant because marijuana was found in his system died over the weekend. Riley Hancey, 20,…
  • Hi Jessica, Welcome here........It is great to hear that you are still alive after so many years of having a transplant. I had mine two years ago. I now enjoy excellent health. I can identify with some of you problems to like trembles and rejection. I have been back in hospital for possible rejection and have come across other liver recipients who had the same, even much more than me. All I can say is that I have a good TX team who is looking after me. I go for regular blood tests and my parameters are all good. My medication was adjusted several times but it is stabilized now. I will NOT advice alternative drugs or supplements. It can be harmful ! Stay with your medication or seek medical advice from your doctors.  

  • Hi, my son has a problem caused by smoking marijuana, he has  pyschology problems, he's moody, aggressive and arrogant all caused by smoking drugs long term.  You are young think long term and stick to prograf.

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