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Tacrolimus blood levels: Do yours vary?

Posted by hello1234 @hello1234, Dec 14, 2022

Hi all, 😊
When you have your Tacronlimis blood level tests done, how much does your numbers vary? Have you seen your Tacronlimis blood level change up to 2 points higher or lower than your previous result?
I am a two year post kidney transplant patient. Since day one in the hospital, I have taken my Tacronlimis and Cellcept (MMF) with food to avoid stomach issues. I am starting to wonder if the food is making my results vary each time or if everyone that takes Tacronlimis sees their Tacronlimis blood level change a couple points. Is your blood level always a consistent number each time?
Thanks for your help everyone! 😊

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gap | @gerryp | Dec 31, 2022
In reply to @rosemarya "Gerry, that happens on occasion. I can remember when a generic version came out for Tacrolimus..." + (show)
@rosemarya

Gerry, that happens on occasion. I can remember when a generic version came out for Tacrolimus and the transplant team told me to let them know if I had any problems while they watched my levels. Result for me was no problem.
On occasion Mayo Specialty Pharmacy has changed supplier (maybe twice in 13 years) they notify me.
Whatever the reason, changes are made, it to be expected. You did the right thing to notify your nurse coordinator.
Like you, I take my meds at 8AM and 8PM. I’m a lite breakfast eater and since I’m retired, before/after meal can vary. My first priority is to be consistent with the 12 hour spacing.

How are you feeling with the increased dose of Tac?

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Thanks Rosemary. I went back and note that I have had 3 different manufacturers of my tac since transplant last Feb. The version I was on for about 6 months was from Strides - and my tac levels were fairly stable.
My nurse coordinator replied to me and said that it is important to let the team know if there has been a change in manufacturer, as this can impact tac blood levels. She said that when that happens, she will order a blood test to make sure the level is in target range. Good advice that we all need to keep in mind. I noticed the difference because the pills I received were a different color from the ones I had been taking and I immediately questioned CVS. I haven’t noticed any changes on how I feel on the increased dosage, but it’s only been about 4 days since the increase. Happy New Year and thanks for your advice.

REPLY
hello1234 | @hello1234 | Dec 31, 2022
In reply to @katebw "@hello1234 you are very conscientious, it inspires me! I’ve struggled with tacrolimus and getting the 12..." + (show)
@katebw

@hello1234 you are very conscientious, it inspires me! I’ve struggled with tacrolimus and getting the 12 hour spacing down. I’m back to work and I have faltered on 12 hour spacing (I can be off by an hour or more occasionally). My levels are fairly steady but not always- target range is 6-8 and I now take 1 mg am, 1 mg pm though this may not be enough (liver transplant 14 mo ago).

Since summer I gained 17 lbs which my team said happens as I’m still rebuilding muscle and meds alter metabolism and blood sugar. And yet I have a weakness for getting a cappuccino and muffin in the midday “to perk me up.” 😊. I’m now making changes and joined a gym to build muscle. I am 55 so now is the time!

I hear you about coping with your CKD for many years, the hope and worry for a transplant, and then the aftermath relief and anxiety. It sounds like you’ve come a long way and I honor you. 💜

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Hi @katebw 😊
What an unbelievably kind message. I can't tell you how much your message means to me. I was really getting down on myself and you gave me a true gift. I have to remember that we are all human and doing the best we can. I start to drive myself nuts looking for the perfect numbers and trying to be perfect. Thank you for sharing that you struggle too with keeping the blood level in range. None of this is easy. And your afternoon coffee and muffin made me smile since that's my afternoon pick-me-up of choice too!
Thank you again @katebw ❤
You are wonderful to jump in to help me and I wish you a very happy and healthy new year! Congrats on your 14 month post liver transplant and please keep me posted on your progress on your new exercise program. That's another project that's on my list for 2023...getting back some muscle tone.

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