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

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.

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

Has anyone experienced mood fluctuations from either prednisone or tacrolimus, or both?

Prednisolone caused me to become quite violent and aggressive, I have been put on the lowest dose (5mg) that can be given to me in my situation. I believe Tacrolimus is not helping either. The problem is the specialists will not comment. I was also given Mycophenolate, and developed a melanoma and they changed it to Everolimus. But short answer yes.

They act perplexed when asked but my research has shown that both Tacrolimus and Prednisolone are both capable of causing psychosis. I am very sensitive to most medication and usually experience the worst side effects.

Yes, they act perplexed with me as well! My nephrologist does not think that a low (5 mg) dose of Prednisone can cause mood symptoms and will not lower the dose, but I think it interacts with Tacrolimus which they will also not lower. The psychiatric side effects of the two medications combine (especially for those with pre-existing conditions). This is my theory, and I am looking for studies of these two medications regarding these side effects.

My nephrologist does not think that a low (5 mg) dose of Prednisone can cause mood symptoms and will not lower the dose, but I think it interacts with Tacrolimus which they will also not lower. The psychiatric side effects of the two medications combine (especially for those with pre-existing conditions). This is my theory, and I am looking for studies of these two medications regarding these side effects.

Yes, my husband takes 3mg’s tac, heart transplant 2013. Couple years out he began getting squamous cells head face & neck, arms. He has had 8 mohs procedures & more freezing than we can count. He tried sirolimus for this reason but could not make transition. His skin is very thin & bleeds a lot. Still on prednisone. Needed to build up on sirolimus before dropping Tac, bleeding became dangerous. He is on a 6 week cycle with dermatologist. He has started getting lesions near his eyes, so now has an eye doctor on board who lasers those.