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

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.

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.

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.

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

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

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.

Well... I kinda kicked and screened to get off pred, it causes high blood sugars and glaucoma etc. They reluctantly weaned me to 2.5 . saying its a low dose, I was scared about the everyday threshold of it building in my symptom over the years.
As I completely stopped after a wk or 2 of 2.5 mg, I felt no difference just better with time. Today my prograf level is 3. However I am almost 23 yrs out from Pancreas tx and Kidney has been over 10 yrs now.
I would love to know if there has been any indications if at at a certain age and duration of taking these drugs every day when we can stop them before they cause more damage than good.

Thank you, Shannon. I found this post from 2020: I was taken off most of my anti-rejection drugs fairly quickly. Within 4 months I was taken off cellcept and prednisone. Then my tracilomus was reduced to 1mg every 12 hours.

I am two years in, and still take 5 mg prednisone once a day, 500 mg mycophenolate (cellcept) twice a day, and 3 mg tacrolimus twice a day with a 5-6 ng/ml level. What clinically indicated a reduction like this and yours? What prednisone dose were you taking, what is your tacrolimus level before and after the reduction, and what were your side effects leading to the reduction?

Hi,
I had a kidney and pancreas ( separate times). I was on prednisone for 2 yrs then weaned . When I was being taken off pred they up my cellcept, that was harsh on my stomach, too toxic for me, then they lowered the cellcept. Now I am 1 mg trac twice a day and 500cellcept twice a day. I also would like to find studies on how much of these a person should take everyday of their life . If there is certain lab work to look at to see if its safe to lower one or the other. Wishing you luck to get off pred! That one scared me to take rest of my life. Temporary makes sense to me

Thank you. Yes, I have had side effects since my transplant two years ago, but my transplant team does not want to change my regimen saying it is better to protect my kidney but citing no studies or reasoning. This is up to them, but I am curious after reading about the low Tacrolimus dosages and eliminating prednisone here. Can anyone cite any studies? Also, what kind of side effects are people having leading to the switch?