Tacrolimus blood levels: Do yours vary?

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.

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.

Good morning Liver TX community. I’ve had an interesting development in the last month or so. I am now 2.5 years post TX and have been feeling great. I’m still on monthly blood labs, and those numbers have been stable with my Tacrolimus blood levels in my target range of 4-6. I have taken 2mg 2X per day for the last 18 months or so, with very few side noticeable side effects.

Then suddenly, with my early August labs my tac level spiked to 8.2. My team reduced my dosage to 1.5mg 2X per day, and ordered follow-up labs after 2 weeks. The tac results from last weeks labs - actually increased further to 9.2. My team has now further reduced my dose to 1mg 2X per day and ordered follow-up labs again for next week.

Has anyone experienced anything like this? The drug manufacturer has not changed, and I am conscientious about taking my medication on a 12 hr schedule (phone alerts help!). I’ve also noticed that I am experiencing more indigestion or sour stomach - mostly at night - since this has all begun.

I was hoping to be able to go on a 3 month blood lab cycle, but it looks like I will continue to be a monthly (or more) pin cushion for the foreseeable future.

Hi @gerryp
By any chance have you taken any new medication since July that might interact with the tacrolimus?
I am assuming you are adhering also to the dietary rules of foods and spices to avoid.
It sounds like you are staying well in touch with your transplant team as you are all are dealing with the unsettling blood results.
I hope your levels are soon stable. Barbara aka ajdo129

Hi Barbara. Thanks for your thoughts. No, I have not started any new medications or taken any new supplements that might have interacted with the tacrolimus. In terms of diet - I do think the sour stomach might be more attributable to some of my summer vacation food choices, but I’ve dialed that back, and still notice the sour stomach - even after I eat simple meals. And, yes, I’m pretty diligent about staying in touch with my Mayo JAX transplant team. They have been terrific. I was just hoping that at some point I could get down to blood labs every 3 months - but that seems less likely to happen given what’s been going on. To further complicate it, CVS just refilled my tacrolimus prescription, and the drug manufacturer has changed. I will probably start taking those pills in the next couple of weeks. Last time that happened, it wreaked havoc on my tac blood levels.
Hope you are doing well.

Good morning
By any chance have you changed the types of food you are eating? Are you eating foods higher in potassium or salt? Are any of your other numbers up?

Ask your doctor about Astagraf XL. It’s a slow release Tacrolimus that you take once a day. It’s helped me control my levels.

Good morning. I think I over-indulged in a few summer treats, like blueberry pie, but not many other food changes. I’m off the pie now! Most of my other numbers have been steady, although I have seen a deterioration in my GFR, which hopefully will begin to improve.

I’ve never heard of a slow release version of tacrolimus. I will definitely research it and ask my team about it. Thanks for the tip.