Tacrolimus blood levels: Do yours vary?
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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I only take TAC and ursodial. I take 6mg per day. I'm consistent with my time and how I take it. My am dose I take at 8 and an hour later I eat and take my ursodial. I'm strict with 1 hour before and 2 hours after. I have been successful with this. The variations in my readings were due to infections and post op complications
Thank you for the excellent information regarding the way you take your meds. And Congrats again on achieving your perfect score! It sounds like you have had some challenges with infection and post op complications, so it must feel wonderful to have some of that behind you. After my kidney transplant I had CMV virus and now I am fighting the BK virus. Each virus, my immune suppression meds were lowered to help my immune system see the virus and fight it. I am hopeful that the BK virus may go to negative next month. Thanks so much for sharing your Tac experience with me! It always makes me feel better to know that other transplant patients have similar experiences.
I am now 10 months post liver transplant and my tac levels had been steady for about 6 months at about an 8 up until this week. My most recent blood test showed a 4.3, so the transplant team increased my tac to 2.5mg 2X per day. They asked me if anything had changed, or if I missed a dose. I did not miss a dose, and the only thing I can think of is CVS changed the provider of the medication. It was previously prepared by Strides up until last week when I received medication prepared by Ascend. Based on what I read on the Beth Israel link, the change in medication provider can impact the tac levels. Has anyone else experienced this? I was hoping to get my tac reduced, as I would rather be on less medication if at all possible. Thanks & Happy New Year.
Hi @gerryp 😊
That's a very interesting point you are bringing up. I am curious to hear if anyone else has had the same experience. Do you take your meds on an empty stomach or with food?
I take my morning pills (8am) on an empty stomach, but my nightly pills after dinner (8pm). I messaged my nurse coordinator to let her know of the change in medication provider. I’m fairly confident that CVS changed the provider because it’s a less expensive generic – although they told me it was a supply chain issue. I think that’s probably BS.
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?
Hi @rosemarya 😊
Happy New Year to you and your family!! Question…do you take your morning pills with or after your " retired lite breakfast"?
I have my iphone reminder set for 8 AM and 8 PM, except for Sunday morning when I set it for 7 AM because I need to leave home at 7:15 AM for early Mass. My primary goal is to keep the 12 hr schedule. so, sometimes before or after I eat breakfast. My husband and I enjoy going out for breakfast, and going for donuts after our fasting lab appointments! Vacation and social events make life interesting and take some planning. Of course the PM dose is several hours after I have eaten.
As I said in a previous post, my priority is the 12 hour schedule.
Early after my transplant, I asked my nurse and Physician Assistant about eating before or eating after because I was struggling with coordinating both. I was told that I should do whatever works best because I would be taking these meds for life…and that whatever I had been doing was working for me. I like Simple!
Keep in mind that my body, my transplant, my medical history are not the same as yours, or anybody else. This works well for me. 🙂
Does this give you any ideas for managing your meds? Has your transplant team indicated whether you should take your meds with or without food?
Thank you so much for your detailed and real world breakfast and adorable fasting lab donut scenario! 😊 I was told by my nurse coordinator and the Mayo pharmacist that I could take my meds with or without food, but try to stick with one or the other so the med level stays as steady as possible. It's just lately that my Tac numbers are bouncing around a little more than normal. I am thinking it is related to what I eat and how much I have been eating for breakfast changes daily. Unfortunately, I love breakfast foods and sometimes I treat myself to more food than other days…some days eggs and bacon, sometimes pancakes, french toast, side of hash browns, oatmeal, etc …..they are all my FAVORITES.
Honestly speaking, I have definitely been indulging in some emotional eating lately. I put on an extra five pounds.
I think a larger amount of food affects my Tac number so I will need to be more disciplined moving forward.
The stress of a lifetime of CKD, then waiting and praying for the transplant, then getting the transplant, and then the stress of the CMV virus, the fear of covid, and now the stress of the BK virus has finally caught up to me emotionally and breakfast foods have become my little stress relief habit. I am going to need to change that bad habit to get my Tac number steady again. ❤
Thank you for always being there Rosemary and sharing your thoughts and experiences. It means a lot to me. I wish you a very Happy New Year filled with all good things!
@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. 💜