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Transplant anti-rejection medications. What's your advice?

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Interested in more discussions like this? Go to the Transplants Support Group.

melbourneaussie69 | @melbourneaussie69 | 3 days ago

After having a Lung Transplant in July 2021 I was placed on 5mg Tacrolimus and have now dropped to 1mg every 12 hours, Mycophenolate (sorry not sure of dosage) and Prednisolone 10mg. The main side effects I had were as a result of the Prednisolone which caused me to have uncontrollable violent encounters, this is now reduced to 5mg. I had a Melanoma grow on my left jaw but caught it early and was taken off Mycophenolate and placed on Everolimus 1mg every 12 hours, I was told it was to lessen the chance of Melanoma. To counter the side effects of drug induced psychosis I am trialing medicinal cannabis oil using 0.4ml of 220mmg/ml CBD in the morning and 0.5ml of 25mg THC/25mg CBD in the afternoon. This is being done with the knowledge of the lung specialists and it is important to take them 4-5 hours apart from your usual medication. This is because they clash with Tacrolimus competing for a liver enzyme that the body uses to break them down. By spacing them out my blood results have remained the same. It has been a life changer for me by way of improving my mood, it is not a magic bullet but is worthwhile to improve quality of life. As you could imagine this was not a popular path to go down from the lung specialists point of view, however, I was close to suicide and this changed almost overnight.

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taco | @taco | 16 hours ago
In reply to @melbourneaussie69 "After having a Lung Transplant in July 2021 I was placed on 5mg Tacrolimus and have..." + (show)
@melbourneaussie69

After having a Lung Transplant in July 2021 I was placed on 5mg Tacrolimus and have now dropped to 1mg every 12 hours, Mycophenolate (sorry not sure of dosage) and Prednisolone 10mg. The main side effects I had were as a result of the Prednisolone which caused me to have uncontrollable violent encounters, this is now reduced to 5mg. I had a Melanoma grow on my left jaw but caught it early and was taken off Mycophenolate and placed on Everolimus 1mg every 12 hours, I was told it was to lessen the chance of Melanoma. To counter the side effects of drug induced psychosis I am trialing medicinal cannabis oil using 0.4ml of 220mmg/ml CBD in the morning and 0.5ml of 25mg THC/25mg CBD in the afternoon. This is being done with the knowledge of the lung specialists and it is important to take them 4-5 hours apart from your usual medication. This is because they clash with Tacrolimus competing for a liver enzyme that the body uses to break them down. By spacing them out my blood results have remained the same. It has been a life changer for me by way of improving my mood, it is not a magic bullet but is worthwhile to improve quality of life. As you could imagine this was not a popular path to go down from the lung specialists point of view, however, I was close to suicide and this changed almost overnight.

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I am happy you were able to address your side effects! What anti-suppresent medication do they think caused the psychosis?

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