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Does anyone here on Tacro use CBD oil to alleviate other issues? Everything I've read about CBD oil online makes it sound very benign, but my transplant pharmacist found a study showing that CBD inhibits a liver enzyme needed to metabolize Tacro, meaning it could have a similar effect to grapefruit in terms of increasing drug concentrations in the blood, possibly to toxic levels. This was a study done in rats, not humans, and there are no anecdotal cases to my knowledge of anyone having Tacro toxicity due to CBD. Does anyone have any info on this? Thanks. 

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  • So in Washington State this issue came up.  I am 2 years out from Liver Tx and on Heart Tx list (soon to be status 7).  After much back and forth my transplant team were OK with CBD use just no inhaling anything due to infection risk.

    I do not find CBD to be very helpful - I am all for it for those it helps.  I found that maybe it made me forget the pain but not assist it like a pain reliever.  Just my opinion.

    Here is the test to find out - use CBD oil, take your Tac and get your blood test results.  I am on 1.5mg BID of Tac and my level is a little low but increasing it is not an option as my Potassium is getting blown out by all the different meds I take.

    Good luck.

    JT

  • I have to ask what CBD oil is?

    Sorry - I saw the same question at the end of the 2nd page.  My bad.

  • Although I cannot answer your question, Colorado has had legalized recreational MJ for a while. Part of the deal in legalization was a research piece. The University of Colorado in Pueblo is the research center. It may be a good place to keep an eye on research.

    https://www.csupueblo.edu/institute-of-cannabis-research/

    Institute of Cannabis Research | Institute of Cannabis Research | CSU-Pueblo
  • Hilary , thank you for this information. I have been hearing a lot of good things about this. Also, I agree about the doctors not addressing how you feel. When I mention my fatigue, muscle aches or tremors my neph tells me I should see a doctor who can address my depression / anxiety . It's frustrating . Be well. Mary
    • Mary if your drug regiment includes statins to reduce or prevent cholesterol look to make s change there

      I took Crestor for about two years before it began to give me calf cramps, after my heart transplant I was on Lipitor and within a year my legs were constantly tired and even weak to stand on after a bout of sitting watching tv - within weeks of stopping it I was fine. Now on Pravastatin
  • Hey, I was doing loads of reading about this cause there are so many studies about CBD oil and how it can kill cancer cells and prevent them. Also it can prevent transplant rejection ... They just made synthestic CBD for anti rejection. Sent all of these to my transplant Drs and they said no. Not gonna take a chance on my own, but I think it could be great. But western medicine takes it time...
    • Can you send me the article/study about CBD preventing rejection? I've never heard of that before. 

  • I have tried several unapproved products but always tell my transplant team what I believe will help me.   What has worked me, may not work for others.

    I have tried L-lysine with Great success when the anti viral drugs that most transplant patients take do not work.  I once had a viral load of 15,000 copies of EBV and brought it down within 2.5 weeks to 250 copies. Once I stop taking Lysine or reduce the amount, I need to increase it to keep myself at a baseline number.

    • I am probably the only one with an organ transplant who has taken large dose of L-lysine. Because I am the only one I cannot say if it will work for anyone else.  If no drug can help your EBV then I would not take more than 500mg per hour and do not take a lysine that contains fillers. I bought the brand NOW that has no fillers added as it is pure Lysine.

      Since my viral load is normal or what I call a safe number, I only take no more than 1500mg in total per day. That means 500mg in the morning, 500mg in the afternoon etc..  If I start feeling symptoms of EBV, I will increase my dose and go for labs to confirm.

    • I meant to say to keep my viral load to an acceptable level.  I can tell how I feel and currently, I believe my viral load is below 500- zero copies as I have no symptoms.

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