What did you experience when cutting down Tacrolimus?

Good morning, @echo2022. I am taking 1.5 mg Tacrolimus in morning and evening at 12 hour intervals. My transplant was in 2009. I have a transplanted liver and kidney. I also take Cellcept. My labs and medication doses remain stable.

Has your doctor or transplant nurse had and comment about your sleep concern or if it is temporary? Is there a particular reason that your doctor wants to reduce your Tacrolimus dosage?

@echo2022, I need to add to my reply.
My Tacrolimus dose has been stable in recent years. I forgot to mention that there were adjustments that I had forgotten about and I want to let you know about that.
I remember 2 occasions when my concentration, ability to focus on a task, and significant tremors were affecting me. After a call to transplant nurse my dose was lowered by 0.5 mg. I felt immediate relief and my labs remained normal. That was at least 5 years ago. I also remember when my trough level was low and my ‘regular’ dose was raised 0.5 mg and I was miserable with tremors and anxiety-like effects. The dose was returned to my ‘normal’ 1.5 where it is currently.
I don’t recall any sleep issues.

I have had sleep issue since my TP. It’s awful the oTC meds just do not help. I take tac and myfortic. My labs have been stable to but I would love to get on the least amount asap.
Good luck and if anyone knows how to help let us know..

I am 9 months post transplant. I take 2mg of tac in the morning and 2 mg in the evening. I also take 150 mg of Imuran in the evening. I used to take tac and Myfortic, but I had horrible headaches and diarrhea from the Myfortic. I have had sleep issues since my transplant and some tremors. Hopefully as I go along my meds can be reduced further. I remember in the beginning I was on a boat-load of medications, so it is better.

Do I understand that you are changing your dosage without consulting with your care team? If so that is something I would not do and so I have no experience in arbitrarily cutting the dosage.

As for my dosage I started out at 5mg in the morning and 5 mg in the evening just after my transplant on 12/30/19. Now nearly three years later I have stabilized at 3 mg in the morning and 2.5 mg at night. The positive from any reduction was less cramping but then that was moderated by magnesium supplements.
Best always,
s!

Your tac isn't too much, and you will take less later.
I think Tac can affect someone's sleep. I've never slept well in the last 15 years after the surgery especially in the first 10 years. Hopefully I can reduce my tac and improve my sleep.

My specially and I talked about the reduction because I wanted to try and she also thought that the tac I take is a little bit more and we could try.
I haven't taken magnesium supplements yet. Is it used to relief the cramping?

yes, I think Tacrolimus affects someone's sleep. My labs are also very stable, but I want to try to the reduction if it's possible. I heard someone only take a few Tacrolimus and keep low tacrolimus levels, even a few people don't take it again. I'll follow up my reduction and update here.

you are lucky without sleep issues. Hopefully I could cut down my tacrolimus a little bit and sleep better.

Tacrolimus causes magnesium deficiency. If you are deficient in magnesium your nerves don't "fire" very well and hence the cramping; most often in your extremities -- hands and feet. The supplements replace the lost magnesium and hence relieve cramping. Magnesium is also often used to help people sleep as it helps relax the muscles (a relaxed muscle does not cramp, right?).
Best always,
s!