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I can no longer tolerate immune suppression drugs

23 years post liver transplant and for the last four I have been struggling. For 18 years I was on cyclosporine but became magnesium deficienct. Over the last four years the clinic has changed my medication as cyclosporine depleted my magnesium too much. They said tacrolimus would do the same. So I tried sirolomus. I could not tolerate that. Then cellcept and my stomach was so bad so they switched me to myfortic. Now after two years I started having such terrible bone pain and tremors. Even on the lowest possible dose.

i am quite frightened and don’t know what to do. Is there anyone on a very minimal dose of medicine, maybe once a week or a few times a week? I don’t think I can be completely off of immune suppression drugs. Is there anyone else who has become sensitive to the drugs? 

Any feed back is appreciated. 

Iris D

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      • Oh its proven than??? I tried and paid for it but had to much thc im assuming ,, too high... Lol

         You weaned yourself off.. Howboften did you get bl9od work to see if you were ok?? Did you tell docs you were doin it???

        • We need to slow our conclusions.  Data-wise there is not enough information to make any assumptions regarding the replacement of ImmunoSup medications.

          There is data regarding pain but like any medication it depends on the person using it.  It will be years before specific strains are identified in a way to know which strain is for what use.  Anti-emedic, hunger stimulation, pain - these are all used in the Oncology setting.  Transplant is catching up but again, in the US we are a ways away from dispensing specific strains.  I have tried CBD and some of the hybrid oils.  For me there is not a strain that is not psychtropic that benefits me.  Chronic pain sucks with a Liver Tx as I do not want anything synthesized that does not have to so that is where, for me, CBD became an option.  You may be different.  Connecting CBD/THC/Hemp to anti rejection is hopeful, maybe wishful,  but I have not seen data that supports it.

          I too wish I was off My Immuno (Tacro) as it has contributed to some side effects that are significant.  But my Tx numbers are always perfect so I hope my body will adjust to mitigate the side effects (memory) as I am happy if my Tx is.

          • Actually it is being used medicinally in many countries 

            Iseral is a leader in the field 

            being used for, cancer, MS, autoimmune disorders. Including 

             Crohn’s disease, rheumatoid arthritis, so to say that it hasn’t been proven is disingenuous. Not only has been proven to be effective, it is being used for treatment in major hospitals in Israel, and other countries. Again I’m not advocating it for Transplant Patients, that’s a personal decision. But it can not And will not hurt anybody. It doesn’t work like that. It has never been shown to ever hurt a human cell or organ in our body.

            can it interfere with meds just with pure CBD 

            not been shown to. I get lab every week and it has never hurt my numbers, in fact it has improved them,

            theres 23.000 studies so far and I’ve read tons of them. 

            Again that’s me and others that are using it. 

            Guess I will be the lab guina pig on this one. 

            I do have Medical card, my Va Drs know I use it for rejection and they are fine with it.

            For me it’s a life and death issue 

            a lung transplant has the highest rejection rate. The lung transplant does not last as long as kidney, heart and liver. The avg 5 Years 

            So I’m doing everything I can to exstend my life and avoid rejection and Cancer, since these drugs make us sucepptable to skin cancer and other cancers. And the THC / CBD fights that. So that’s we’re I am at. Again that’s my choice 

            were all on our own journey 

            i just feel everyone’s  experience helps us all. All information is valuable by like many have pointed out, check the research.

            and then make your decisions 




          • Thanks Jeff.  This discussion really has taken off and I'm afraid we are going to have some of our transplant patients lying up in the hospital with an accute rejection episode.  


        • Yes if it has THC in the oil it can make you high 

          CBD oil by itself can not get you high, since it has no THC 

          but you still get many of the health benefits 



  • Before I went off immune suppresions altogether, I was on a very low dose, lower than supposedly was acceptable. My hepatologist was okay with a very low dose as long as my other labs were okay.

    ( BTW: I was on prograf for almost 7 years before weaning myself off altogether just two years ago)

    • I read your other post which makes me think one of the reasons this has happened for you was being a Live Liver Tx.  It would make sense in that setting.   And maybe it is or could be that case for others.

      I also did wonder how they would monitor you moving forward?  I wonder if biopsy was required or what the baseline was?

      This link was a quick search that is easy to digest.  Not exactly a lot of data but interesting.




    • Hi Ono,

      How and what did you use to ween off meds ?. Are still off meds, and for how long but now ?.



      • Sorry for the misspelled words, small phone screen.

    • I hope to do that

      im only 10 months out but I’m thinking due to my use of oil and edibles is protecting my Lung Transplant from rejection 

      im down to .05  of prograf in morning 

      and 250 Cellcept morning and night 

      5 mg predisone 

      and Valcyte and vanclover 


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