Tacrolimus: Temporary Cessation

Posted by gaylea1 @gaylea1, Jul 3 12:32pm

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?

I have missed a day sometimes but no effect. I am anxious for someone to answer this as it has been a big concern of mine too. I was always instructed to take my tacrolimus every 12 hours exactly.

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@gaylea1 I have never heard of such a thing. I'm interested to know what others have to say about it, also. Your transplant team ok'd it??
JoDee

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@gaylea1 and @jerrynord I too am interested in hearing what your transplant department says. A nurse at mine said at one point that you have an hour grace period on either side of the time you should be taking it but other than that I have not heard anything, and frankly I don't think that nurse always gave the best advice. She is gone now.
JK

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I would also add I have never been off of all all anti rejection meds at once but are you on any others like celcept? Or only Tacrolymuis. I was on 2 originally but now only take Tacrolimus due to a virus issue.

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@danab

I would also add I have never been off of all all anti rejection meds at once but are you on any others like celcept? Or only Tacrolymuis. I was on 2 originally but now only take Tacrolimus due to a virus issue.

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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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@contentandwell

@gaylea1 and @jerrynord I too am interested in hearing what your transplant department says. A nurse at mine said at one point that you have an hour grace period on either side of the time you should be taking it but other than that I have not heard anything, and frankly I don't think that nurse always gave the best advice. She is gone now.
JK

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I was also told to try and keep to the 12 hours. I have forgotten every now and then and missed a dose but not often. This has been a full 5 days. Blood tests to be taken again early next week. My liver enzymes were elevated on Thursday.

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@jodeej

@gaylea1 I have never heard of such a thing. I'm interested to know what others have to say about it, also. Your transplant team ok'd it??
JoDee

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The hepatologist is part of my transplant team. It was by her direction that I stopped the tacrolimus but expected we expected results from a blood test (mostly tac levels) but they never got done. When I hadn't heard anything this morning and I was feeling off I called the transplant clinic. I took .5 mg about noon today.

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I went out for my walk this morning and got an earlier start than usual. And so I left the house without taking my 8AM meds. I am so thankful that I had my iphone in my pocket because the alarm went off, and let me know to turn around! Whew

@gaylea, how are you feeling? Did your doctor or pharmacist tell you if you should be alert for any signs or symptoms while waiting for a lab?

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@rosemarya

I went out for my walk this morning and got an earlier start than usual. And so I left the house without taking my 8AM meds. I am so thankful that I had my iphone in my pocket because the alarm went off, and let me know to turn around! Whew

@gaylea, how are you feeling? Did your doctor or pharmacist tell you if you should be alert for any signs or symptoms while waiting for a lab?

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@rosemarya I'm still kind of shaky, no fever and nauseous. I asked if I should watch for signs (??) But the hepatologist basically said "you'll know". Thing is I'm still recovering from pancreatitis so I'm not sure what symptoms I may be missing. So basically I'm in limbo.

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@gaylea1

@rosemarya I'm still kind of shaky, no fever and nauseous. I asked if I should watch for signs (??) But the hepatologist basically said "you'll know". Thing is I'm still recovering from pancreatitis so I'm not sure what symptoms I may be missing. So basically I'm in limbo.

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@gaylea1 I have been following this discussion closely, and am concerned like you and several others are! Can you contact a trusted pharmacist for guidance? Personally speaking, the hepatologist's response was totally inadequate and rude.
Ginger

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@gingerw

@gaylea1 I have been following this discussion closely, and am concerned like you and several others are! Can you contact a trusted pharmacist for guidance? Personally speaking, the hepatologist's response was totally inadequate and rude.
Ginger

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I agree with Ginger! Whenever we take anti-rejection meds – I had a heart transplant and take both sirolimus and cellcept – there are pharmacists available to us through either CVS Specialty or from whichever company you obtain your meds. They are available to answer these types of questions. I might suggest you try there and explain your circumstances and symptoms. Ellen

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@gaylea1 I think calling your team should be your next step. There should be somebody on any day if you had your transplant at Mayo.

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@danab

@gaylea1 I think calling your team should be your next step. There should be somebody on any day if you had your transplant at Mayo.

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@danab believe me I've been in touch. I'm back on the tac on a lower dosage now but my concern is if it caused any damage. They won't know until my blood tests are completed. Labs wouldn't do the test Thu or Fri and Wed was Canada Day.

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@estrada53

I agree with Ginger! Whenever we take anti-rejection meds – I had a heart transplant and take both sirolimus and cellcept – there are pharmacists available to us through either CVS Specialty or from whichever company you obtain your meds. They are available to answer these types of questions. I might suggest you try there and explain your circumstances and symptoms. Ellen

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@estrada53 the pharmacist will do nothing without a doctor's prescription. They are not medically qualified to prescribe medications. Advice I'd one thing but taking action is another.

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@gingerw

@gaylea1 I have been following this discussion closely, and am concerned like you and several others are! Can you contact a trusted pharmacist for guidance? Personally speaking, the hepatologist's response was totally inadequate and rude.
Ginger

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@gingerw what can a pharmacist do? They follow the medical doctor to write prescriptions. A pharmacist is not a qualified physician. My pharmacist is concerned but his hands are tied.

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