Tacrolimus induced psychosis post liver transplant.

Hi @sec1205 That’s a fairly high tacro trough considering the low dosage your’re on. What is the goal your transplant team is shooting for? One of the side effects of a higher tacro trough is mental status change.
You had only mentioned being on progesterone along with the low dose of tacro. But if you’re also on Cellcept and or other meds too, there can be an interaction in medications where one will cause another to not metabolise through the system as quickly, causing a higher trough.
I had that happen when switching from an IV form of antifungal to oral Pozaconozol. My normal trough was 7. With the same dosage of tacro but the new oral med, my trough zoomed up to over 21 + within a couple of days! I was a royal mess and my kidneys went into faiure.
Have you spoken with your team about adjustments to the tacro?

@loribmt hello!
I get labs done weekly, have for 7 months. Goal is to keep liver happy and reduce kindney strain. My kidneys are struggling. Tacro trough fluctuates weekly. Sometimes it's low, then goes high. I have asked for a different med because I feel tacro doesn't like me but not been given any changes. They are aware of my concerns.
Sorry you were also dealing with side effects of medication. They can make us feel pretty crummy. Hope you're better now.

@jaxpilot
Congratulations on your transplant & new thinking. My surgery was December 2022. My kidneys struggle and with your input I'll ask about my Cellcept/tacro combination to see if it can be adjusted. Im hesitant to suggest treatment as I'm not a professional Dr. But the tips I've received here have given me questions to ask my team. Thank you.

Happy boating. Keep your skin protected!

Unlike a solid organ transplant when a person has a bone marrow transplant we aren’t on immunosuppressants for the long haul. Eventually the new stem cells become familiar with their new host body (me, in this case) and we can taper off. Even during my taper when I was down to .5 mg tacro daily, my kidneys were still declining. My transplant doctor said that tacro inhibits the flow of blood through the kidneys and was working to get me off the tacro. He felt my numbers would improve and he was right. My kidney numbers have really returned to normal since I’m fully off.
I just wanted to share that because of the higher trough you’ve been having with your tacro. It can affect the kidneys. I sure hope you find a balance because you really can feel crummy with that higher tacro trough. Better living through chemistry, right? 😅

I am 18 months post. I am currently taking 3mg in the morning & 2mg in the evening and my Tacro level is set & fluctuating between 3 & 5. Yours is somewhat on the high side vis-a-vis your current dosage. May be it is because of this fact that your doctors kept the dose so low so early meaning taking a higher dosage than you do now may further jack up the Tac Level into the teens. Like you said it could be due to your unique (i.e. individualized) physical response to Tacrolimus. I also take 2 X 500mg cellcept.
So far I had no mental or emotional side effects but I feel that I am in the initial stages of developing gastric problems. My main concern is the fatigue I am experiencing for the last 4-5 months. I could not shake it off & my transplant team is telling me that my liver is functioning well & I need to search for the culprit elsewhere with my primary care doctor.

I’m on tacrolimus 3mg am & pm and mycophenolate 500 mg am & pm and am 5 years post liver transplant. In the beginning I was also on prednisone. I had a couple bouts of rejection in the first year post. I do get very tired and have to rest everyday. I get irritable but not as bad as when I was on prednisone.
I was 61 when I had my transplant.

@rith congratulations post 5 years! My labs were great this week. So hopefully I can get off Prednizone. My follow up with my coordinator is Wednesday. My tacro went down to 7. Thank you for your story. I look forward to celebrating my 1 year anniversary December 1st. 💕

@jaxpilot Great advice!! I'm not a sit down kind of person but have learned to rest more through this process. Fatigue is a concern for me. I hiked avidly and could cover 6 miles easily, sadly haven't stepped foot on the mountain yet. Hope to get back to that soon.

I responded poorly to tacro and ended in the hospital with pancreatitis about 18 mos after transplant. Truthfully, I never felt good on Tacro. It bothered my digestive system and I experienced some depression, but not sure if that was just post-transplant blues during COVID lockdown:). My doctor put me on Cyclosporine (modified) with Myfortic and I feel much better. Cyclosporine has its own side effects but overall I feel much healthier. Hope you feel better soon!

@stephanierp thank you for your input. I appreciate it. The more I talk to people the more I come to realize that tacro may not be the best for me. I felt great right after transplant but like you never really feel my best. I'll suggest those two medications at my appt today. Hopefully a change will take place.