Tacrolimus induced psychosis post liver transplant.

Posted by sec1205 @sec1205, Jun 30, 2023

Has anyone experienced adverse side effects from tacrolimus? Such as irritability, anger or psychosis? I am struggling with my mood post liver tx.
Lashing out, yelling. It's very rough on my loved ones. I should be happy for a new chance at life but find myself moody & miserable most days.
I take 1mg tacro in Am & .5 tacro at night as well as progesterone 10mg. So my dose is fairly low. 🤔 I've asked about switching medications but was told it is the cleanest & most effect to combat rejection.

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Hi @sec1205, I haven’t had a liver transplant so hopefully someone who has walked that walk will be able to chime in, but I have taken tacro. The only time tacro had me feeling like that was initially with larger doses. You’re on a very small dosage so I would be surprised if it’s the Tacro. (But that’s just my experience)

My money is on the progesterone causing your mood swings. It’s usually a ‘feels good’ mood hormone but I had been on it for a while too and that can make us swing hot and cold in moments. Also, if you stop taking it, ask for taper instructions. Stopping cold turkey can be really disrupting to our emotions as in…family stay clear! 😅

Found a good article for you to read. https://www.larabriden.com/progesterone-mood-treat-pmdd/

Have you had your hormone levels checked?

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@loribmt

Hi @sec1205, I haven’t had a liver transplant so hopefully someone who has walked that walk will be able to chime in, but I have taken tacro. The only time tacro had me feeling like that was initially with larger doses. You’re on a very small dosage so I would be surprised if it’s the Tacro. (But that’s just my experience)

My money is on the progesterone causing your mood swings. It’s usually a ‘feels good’ mood hormone but I had been on it for a while too and that can make us swing hot and cold in moments. Also, if you stop taking it, ask for taper instructions. Stopping cold turkey can be really disrupting to our emotions as in…family stay clear! 😅

Found a good article for you to read. https://www.larabriden.com/progesterone-mood-treat-pmdd/

Have you had your hormone levels checked?

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@loribmt Thank you for your response & for the article link. I had a hysterectomy so only have 1 ovary. I have not had my hormones checked recently. But will do that at your suggestion. I just started on the progesterone and am hoping to be off it after 30 days if my liver enzymes balance out.
While recovering from transplant surgery I had hallucinations which I was told was from anesthesia & massive doses of tacro. I've been waiting these 6 months for a balanced mood. It's fleeting...

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@sec1205

@loribmt Thank you for your response & for the article link. I had a hysterectomy so only have 1 ovary. I have not had my hormones checked recently. But will do that at your suggestion. I just started on the progesterone and am hoping to be off it after 30 days if my liver enzymes balance out.
While recovering from transplant surgery I had hallucinations which I was told was from anesthesia & massive doses of tacro. I've been waiting these 6 months for a balanced mood. It's fleeting...

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Oh gosh, I know how nasty we can feel trying to get just the right balance of tacro in the beginning of our treatment…along with the other meds. I had a bone marrow transplant and many of our meds run parallel.
I received a prescription for progestin during peri-menopause 25 years ago. My mom and sister, who is 18 years older than me, both went through menopause early at 46. So when I was the same age I was no longer having periods either. My gynecologist wasn’t convinced that I was in menopause at such an early age so he put me on progestin to ‘force a period’ which should have happened within a few days of stopping. No period was forthcoming but the abrupt withdrawal from the progestin he prescribed was the worst, and I mean profoundly the worst few weeks of my life with serious depression, anxiety and raw emotions. Very unlike me!!
A friend of mine is a licensed naturopathic practitioner who was instrumental in getting me on a bioidentical plant-based hormone therapy for a short time. That balanced me out and put me back in sync. I was in menopause and declined HRT through my gyno. He then summarily dismissed me from his practice. My mom had developed uterine cancer from being on Premarin for 20 years without ever being followed up with her old GP. I was not going that route…

I hope you get some relief soon, it’s like having PMS that never ends! 😵‍💫
PS, Don’t attempt to slice a cake. (That’s from a birthday card a friend sent many years ago. The picture of the cake on front was hacked to pieces. And the inside said, don’t cut the cake with PMS). 😂

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@loribmt

Oh gosh, I know how nasty we can feel trying to get just the right balance of tacro in the beginning of our treatment…along with the other meds. I had a bone marrow transplant and many of our meds run parallel.
I received a prescription for progestin during peri-menopause 25 years ago. My mom and sister, who is 18 years older than me, both went through menopause early at 46. So when I was the same age I was no longer having periods either. My gynecologist wasn’t convinced that I was in menopause at such an early age so he put me on progestin to ‘force a period’ which should have happened within a few days of stopping. No period was forthcoming but the abrupt withdrawal from the progestin he prescribed was the worst, and I mean profoundly the worst few weeks of my life with serious depression, anxiety and raw emotions. Very unlike me!!
A friend of mine is a licensed naturopathic practitioner who was instrumental in getting me on a bioidentical plant-based hormone therapy for a short time. That balanced me out and put me back in sync. I was in menopause and declined HRT through my gyno. He then summarily dismissed me from his practice. My mom had developed uterine cancer from being on Premarin for 20 years without ever being followed up with her old GP. I was not going that route…

I hope you get some relief soon, it’s like having PMS that never ends! 😵‍💫
PS, Don’t attempt to slice a cake. (That’s from a birthday card a friend sent many years ago. The picture of the cake on front was hacked to pieces. And the inside said, don’t cut the cake with PMS). 😂

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@loribmt
So insightful. Thanks!
Sounds like you have it under control now. Love the card. And yes my behavior is unlike me.
Tacro & progesterone is the standard care for my situation and so I endure.
But gosh I am exhausted from myself. Lol 😆
I will fight this because I received a precious gift from my sister, donor and she told me to honor her I must live my best life!! 👌 ❤️

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@jaxpilot Thank you 😊
I'm happy to hear you're full of life & happy with your new liver. It amazes me how fast we can recover from a liver transplant. I was told while on Progesterone to avoid sugar, coffee & carbs. Exercise and that it would help with weight gain. Did you experience any adverse side effects from Progesterone? What did you do about them if so? I'm finding that I'm sensitive to Tacro, perhaps even allergic to it. Did you have problems with it?

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@jaxpilot my glucose is average and doesn't seem to be a bother. I'm sorry you have to deal with dexcom. I had one pre liver transplant. Prednizone is unpredictable as well as necessary. But if I could have a medication for the anger I'd be happy, or at least easier to get along with. 😕
I joke my donor had anger issues and I'm dealing with them now. Who knows I guess. I do have her DNA, etc. Lol 😆

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I take 4 mg of TAC p/day. I would think it's the progesterone. After my liver transplant when I was on Prednisone I begged my Doctors to take me off as I experienced terrible anxiety, tremors and sleeplessness. Once I was taken off things improved significantly. Hopefully this will be of some comfort for you.

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Your Tacro is in too low a dosage to leave any appreciable side effects.

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@rgb3547

Your Tacro is in too low a dosage to leave any appreciable side effects.

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@rgb3547 thank you for responding. I must be an anomaly because I definitely feel different being on the dosage I'm on. My trough levels register 10 or higher. So I guess I metabolize it slowly.
I also take 1000 of Cellcept.
What doses do you take ? Do you have any side effects? Was you liver transplant recently?

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@footballmum

I take 4 mg of TAC p/day. I would think it's the progesterone. After my liver transplant when I was on Prednisone I begged my Doctors to take me off as I experienced terrible anxiety, tremors and sleeplessness. Once I was taken off things improved significantly. Hopefully this will be of some comfort for you.

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@footballmum Thank you. I appreciate your input. I'm not looking forward to continuing on progesterone but realize it's keeping me from rejecting my liver.

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