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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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  • I read through the thread and noticed a lot of people mentioning CBD Oils. I had a heart transplant 3 years ago but I've never taken CBD oils myself but I've been thinking about asking my doctors about it eventually. My dad takes CBD Oil once a day and he has psoriasis and it cleared out most of it since psoriasis is a type of immune system response. So it led me to beleive that it does supress the immune system. He has been buying his oil from a reputable online source from Colorado called Bluebird Botanicals. They publish all of their test results on their website so that you know that their products are safe to use and they're half the price than other sources. 

    It's good to know that other transplant people have successfully taken it. I hadn't found too much informaiton online about solid transplant people taking it successfully. Although it would be too risky going off of the regular anti-rejection medicaiton so I don't plan on doing that but I'd consider just taking it along with my anti-rejeciton medicaitons for now if possible.

    • Sounds like a good plan

       

  • As usual I agree with Mark - even if the Docs don't agree they need to be consulted. At worst get a second opinion if the meds are not working for you.  I wish I was off Tacro (down to 2mg BID) as it has destroyed my memory but when they did play with my meds (adding Myfortic) they over did it and I got Shingles, and that is/was not very fun.

    Wondering if they had you supplementing Magnesium this whole time? - since I am not positive of what the protocol was when you had your transplant.  Like other Liver Tx patients, I am quite happy to see your long and successful post transplant life.  

  • Liver transplant?  I have been also very sensitive to tacrolimus. I won't list my symptoms because I think they're almost universal in women. BUT...My doc, who teaches at UCSD and who trained the doc who did my transplant in GA, has been lowering my dosage steadily.  I am three years post-transplant and am taking 1mg tacrolimus (Prograf) am and 1 mg pm.  He recently told me I will soon be off the immune suppressant altogether. Although he did not mention it, I read an article on what was called "chimera tissue." It has been discovered that in some cases a tissue develops between the host tissue and the transplant tissue that is a combination of both. It seem to allow the body's immune system to accept the donor organ.  Look it up and good luck.

    • Hmm, I’ll have to look it up. Did your doctor say you had this tissue?  Or just what may happen ..... so curious. I’m Janice with a liver transplant 1.5 years 

    • Amazing, if you get rid of Im Supr, please let inform 

  • Hi Iris; for me you give good information, also happy to see your 25 years after transplant.  I am on Sirolimus since 5 years, initially was on Cellcept, along Prednisone (steroid) and within one month go to Sirolimus. Sirolimus  initial dose was 6 tablets a day, and within 6 month came down to 4, and after one and half year 2, and since 3 years (approximately) just on 1, with every immune suppressant bone deficiency issue arises, so  Dr recommended me once  a week Calcium, and each day vitamin D, now my osteoporosis progress stop after 1 year of use.  Though first 6 months  Sirolimus affects were strong for me as you feel, I am not sure, but my Dr. keep insisted on that. Sirolimus does not have skin side effects, or like oily appearance, same time it keeps weight normal; good for ladies; 

  • My husband is going on 5 years post transplant.  At around 3 years post transplant he was taking 125 mg of cyclosporine both morning and evening when his blood level of cyclosporine suddenly shot up from an average of 125 to an alarming 300.  His post transplant hepatologist immediately cut the dosage to 75 mg cyclosporine in the morning and 75 mg cyclosporine in the evening and although his labs consistently show the level of cyclosporine in his bloodstream at around the mid 60's is doctor is fine with that.  They monitored my husband carefully in the beginning to make sure he didnt' have a rejection episode because as you know anything below 100 is supposed to put you at risk of rejection.  His magnesium levels are fine and he has good kidney and heart function.  The only side effect of the cyclosporine is high BP.  That is controlled with a beta blocker.  I would ask my doctor to carefully monitor a decreased dosage of cyclosporine since you tolerated well for 23 years.

  • I really hope you guys are making these decision to go off your transplant meds under the advisement of your doctor.  Taking these matters in your own hands could lead to a rejection episode.  I know a lady who had a liver transplant over 20 years ago.  She was down to a very low dose when her doctor decided to change her meds.  A few weeks later she was in the hospital with a rejection episode.  I believe you are playing with fire to do this on your own.

    Mark
    Liver Transplant 2015

    • As for me No I wouldn’t stop my immune drugs just saying I’m glad I’m on lower dose, but in a few years when they confirm that THC/CBD 

      Is a better treatment than Prograf 

      and the other immune drugs 

       Actually they already know for the most part, but are not allowed human studies 

      they have confirmed in research that those who do the THC/CBD oils lived longer, and had less chance of rejection.

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