1. < Transplants

Tacrolimus: Temporary Cessation

Posted by gaylea1 @gaylea1, Jul 3, 2020

I'm a liver transplsnt patient (post 18 months) I was recently in hospital for an ERCP (bile duct stent removal) and once again got pancreatitis. My liver enzymes were sketchy so the hepatologist stopped my tacrolimus (1mg 2x day). That was on Sunday June 28th. I was released after 8 days which was June 29th and told not to take any tacrolimus until I had blood tests that were ordered for July 2nd. The blood clinics would not do my blood test first tac due to some crazy policy about not taking tests the day after a holiday. In my case July 1st Canada Day. Then they told me (blood lab) that they also won't do the tac test on a Fri - Sun. So now I'm 5 days in with no tacrolimus. I've called my doctors and they finally ok'd .5 mg 2x day. I've been dizzy and a bit confused and my concerns are - did being off the tacrolimus harm me in any way? Has anyone else gone 5 days without it?

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gaylea1 | @gaylea1 | Jul 7, 2020
In reply to @tasher3433 "I, too, have your back. The worst thing is not knowing. Do not imagine things. Trust..." + (show)
@tasher3433

I, too, have your back. The worst thing is not knowing. Do not imagine things. Trust your team. I will be waiting to hear that your doctors are on the ball and you will feel more like yourself soon.

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@tasher3433 thank you so much!

REPLY
azdan99 | @azdan99 | Jul 10, 2020
In reply to @gaylea1 "I was originally on cellcept and tacrolimus but the cellcept was dropped after 4 months after..." + (show)
@gaylea1

I was originally on cellcept and tacrolimus but the cellcept was dropped after 4 months after transplant. I've only taken tacrolumus since then. 1mg x2 day.

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I am 17yrs out and have taken both tacrolimus and cellcept(mycophenolate mofetil) for the entire time. My tacro is down to 0.5 twice a day; cellcept has been 1000mg twice a day for the entire time. No issues in 17 years. Praise the Lord!

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2 replies
gaylea1 | @gaylea1 | Jul 10, 2020
In reply to @azdan99 "I am 17yrs out and have taken both tacrolimus and cellcept(mycophenolate mofetil) for the entire time...." + (show)
@azdan99

I am 17yrs out and have taken both tacrolimus and cellcept(mycophenolate mofetil) for the entire time. My tacro is down to 0.5 twice a day; cellcept has been 1000mg twice a day for the entire time. No issues in 17 years. Praise the Lord!

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@azdan99 I'm so happy to hear you're doing so well. That is fabulous ❤ I only take .5 mg tac twice a day. The cellcept and prednisone were dropped about 4 months post transplant. I seem to be doing very well so far. 🙏🙏

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rwalkie | @rwalkie | Jul 10, 2020
In reply to @azdan99 "I am 17yrs out and have taken both tacrolimus and cellcept(mycophenolate mofetil) for the entire time...." + (show)
@azdan99

I am 17yrs out and have taken both tacrolimus and cellcept(mycophenolate mofetil) for the entire time. My tacro is down to 0.5 twice a day; cellcept has been 1000mg twice a day for the entire time. No issues in 17 years. Praise the Lord!

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This is fantastic news! I'm 5 years out age was 66 when I received my transplant. I take 500mg a day of cellcept and 1mg of tacrolimus 2x a day (2 in the am) and 3 (in the pm). So grateful I don't have a lot of medicine to take.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 19, 2020

@gaylea1, You have been quiet, and I am concerned about you. What is going on? What has your transplant told you or done about your tacrolimus dosage?

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1 reply
gaylea1 | @gaylea1 | Jul 19, 2020
In reply to @rosemarya "@gaylea1, You have been quiet, and I am concerned about you. What is going on? What..." + (show)
@rosemarya

@gaylea1, You have been quiet, and I am concerned about you. What is going on? What has your transplant told you or done about your tacrolimus dosage?

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@rosemarya Hello Rosemary. The pancreatitis has settled to less bouts of nausea and no pain. I was given a reduced dosage of tac from 1mg to .5mg. I still feel a bit wobbly and dizzy at times. I have a phone in appointment with my hepatology team this Wed morning. I'll go over my concerns and get their feedback on my last labs. I'm just thankful the stent is out and seems viable. My next few set of labs will either confirm or deny this is the case. The liver function seems to be doing quite well.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 19, 2020
In reply to @gaylea1 "@rosemarya Hello Rosemary. The pancreatitis has settled to less bouts of nausea and no pain. I..." + (show)
@gaylea1

@rosemarya Hello Rosemary. The pancreatitis has settled to less bouts of nausea and no pain. I was given a reduced dosage of tac from 1mg to .5mg. I still feel a bit wobbly and dizzy at times. I have a phone in appointment with my hepatology team this Wed morning. I'll go over my concerns and get their feedback on my last labs. I'm just thankful the stent is out and seems viable. My next few set of labs will either confirm or deny this is the case. The liver function seems to be doing quite well.

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@gaylea1, You've had a bumpy journey, so it is especially uplifting to hear that you are progressing in a positive direction. I am happy that your liver function is showing good results. Let us know what you learn about the tacrolimus after you talk to your team.
Hugs.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 30, 2020
In reply to @gaylea1 "@rosemarya Hello Rosemary. The pancreatitis has settled to less bouts of nausea and no pain. I..." + (show)
@gaylea1

@rosemarya Hello Rosemary. The pancreatitis has settled to less bouts of nausea and no pain. I was given a reduced dosage of tac from 1mg to .5mg. I still feel a bit wobbly and dizzy at times. I have a phone in appointment with my hepatology team this Wed morning. I'll go over my concerns and get their feedback on my last labs. I'm just thankful the stent is out and seems viable. My next few set of labs will either confirm or deny this is the case. The liver function seems to be doing quite well.

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@gaylea1, I have not seen any posts from you recently. And I am wondering how you are doing? Has the pancreatitis subsided? What about the stenting procedure? Are the followup labs providing any useful information regarding your tacrolimus issues? I (we) would love to hear from you.

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