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Tacrolimus (Advagraf) after 15 months post transplant

I had a kidney transplant about 15 months ago. I am taking daily 8 mg Tacrolimus and Mycophenolic (Myfortic) 540mg x 2. I am 5 ft tall and weight 90 lbs. I wonder if  the med. is too high for me. I have some temor especially in the afternoon. Do you know what is the normal dose after one year post transplant? Thank you.

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  • Tremors:

    I had temors and now 2.5 years later I do not have them as much but not a steady hand for sure.  I exercise a lot so strength does not matter, just how it is.  That is Me.  I have been on single agent Tacro just a few months after TX.  They did add Myfortic at 2 years which gave me Shingles and got off it.

    Normal Dose:

    So there is no Normal Dose at any point during transplant.  Trough levels become important at your stage which I assume is what they measure for Tacro.  I read a number of studies and some vary but for instance my Trough should be 3.0-8.0.  Based on my other factors we like it around 4-6 for Me.  Important part about Trough numbers.  Medication should be taken 11.5 hours prior to blood work for ideal Trough.  While I still have Tacro Brain (memory) it is nice to get to lower dosing, just takes time.  

    One piece of advice I offer that may depend on your insurance, etc.  I asked my clinic to send Standing Orders for all of my main tests, CBC, Metab and Tac. to a close blood draw site.  I can go very locally to the phlebotomy site close to me for my blood work when it fits best.  You will hopefully be progressing enough where you just do not see your transplant peeps as much.  So need weekly, monthly, quarterly labs?  You just get them (and time them) at you leisure.  Also assists in empowering yourself regarding recovery and moving forward.  I generally do not wait for their call - it is in my calendar so if I show up on my own for blood draw or my appt is delayed I will usually leave and come the next day if I cannot get my Tacro done within 30 minutes of the 11.5 hour mark.  

    Anything I posted is food for thought for you and others to ask their doc about.  They will guide you but make sure you have these questions and concerns answered by them.

  • I’m new to the Group and really don’t know the reply thing works. Or guidelines 

    That said it’s sure seems a lot of tach and others, I had Left Lung Transplant 10 months ago. I only take 0.5 tach and 500 mg of Cellcept

    so I don’t have the side effects that others have.

    i know if my tach Level gets to high it will affect me. Metal taste, tremors, Etc.

    I choose after researching that if I added Marijuana oil or an edible, it acts as an immune suppressior. Which in turn causes me not to have to as many drugs and high dosage.

    The THC and CBD oils block the CB 1 and CB 2  receptors which is the cells that want to attack my new lung. It acts as gatekeeper 

    but that’s only what I have researched over a couple years. And I’m know Dr or Expert. Only what I have found among many transplant patients are doing the same as me. So Far studies have shown those taking THC have better outcomes than those who don’t 

    as far as rejection 

    hope it was helpful, if you research it in medical journals and studies you will be surprised 

    • I'm also new to this group. I had a kidney transplant back in 2001. I am currently taking 1.5 mg. Sirolimus & 1.5mg of Tach. I recently had markers for MGUS (multiple myloma). My kidney function is good & bone xrays is normal so far.  I was wondering if I would benefit from this oil. I have read people with cancer take these oils and get better. Thanks for your response. Anita

      • All I can report is my own personal transplant   Experience 

        and give you study info. I Really want to be careful here. First off you would  benefit from CBD oil

        how much depends on quality and strength of oil. Or Edible 

        I have never seen anyone hurt by CBD oil 

        its impossble for marijuana in any form to kill you. There has never been a case of anyone dying from Cannabidiol 

        but can it interfere with the  metabolizing of meds? 

        Some Drs worry that it might mess with Tach levels, by increasing them. 

        That said in just a few years rejection drugs will be given in some form of the canabis plant.

        thats what their working on as we speak. Studies show it work on Mice for instance, but only human trials available at this time is Transplant folks like me

        who decided to use it. I make sure it’s not messing with my meds by way of blood tests weekly. I can only tell you there’s many who have had liver and kidney  transplant use it with great success 

        many acctually no longer take immune drugs just the edible or oil. In my case I’m the only one I know that had Lung Transplant and use it. All I can say is the Drs. We’re stunned by my recovery and numbers.

        I only  have to take 0.5 tach in morning and 250 Cellcept 2xdaily along with low dose 5 mg of prednisone. 

        Still have to take Valcyte Vfend, bactrium as well all of which suck cause they can and do damage kidneys and cause muscles to lose strength and thin skin. So for me the lower the dose the better for me.

        of course I do not Smoke it, you can get aspergillosis from bacteria with weakened immune system. I get my edibles that are medical grade lab tested for no GMO pesticides and purity.

        I also have a medical marijuana card. So I’m not doing anything illegal. Does it work for me yes

        my new lung is working great

        my blood work is for most part normal 

        with the exception that potassium and cretine can rise due to drugs, mostly  Presidone

        the immune drugs.

        all I can say is talk to your Dr. he or she may freak out, or may say you can try it. 

        P.S. I have never been flagged for canabis by my blood work 

        they don’t even test for that post Tx

        hope it helps if you want me to forward you the medical journals and studies on this just let me know we’re to email or text

        goid luck 



  • I had a kidney tx 10 months ago and my TX team keep changing my dose of Agragaf which is Tacralomus going by my blood work results I also got the shakes and when I do even without the blood work they will phone me and change my dose 

    • Greta,

         What was your last Tacroliumus lab reading?  They generally try and keep your levels at the lower end of normal and in doing so it greatly reduces the side effects like shaking, sore feet, etc.


      • My last tac was 6.1 they try to keep it a bit lower so I was put on 4 instead of 5 mg of tac I think my next test for it will be in about a month 

        • Greta,

             Well it sounds like they are heading in the right direction.  I'm 2-1/2 years post liver transplant and they are keeping my tac level around 4.5-5.0.  It has made a big difference with the side effects.  They have to bring it down gradually which sounds like what they are doing.  I'd stick it out and be patient with them and hopefully things will improve over this next year.  Take care.


          • Good to hear best medicine I find is to keep positive and do as the team say it works 

  • Prograf gives most transplants the shakes. Have a friend who can’not drive his hands shake so bad  he is 9 years out. ( rarely someone shakes that bad and long) am 8 years out and quit shaking in 2014 

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