I’m 14 months post transplant. My donor kidney is doing very well. However, I’ve been experiencing numerous major changes (6.5 to 12.9) in my Tacrolymous levels. Of course I'm in regular contact with my transplant center about this. They seem to be puzzled by these data fluctuations too.
Have any of you experienced this? Was there anything you did with diet, fluid intake, etc at home that seemed to help calm this down? What did your transplant team do to get this calmed down?
Jayhawker
I have seen some fluctuations, but not to the extent you describe. The factors that have the biggest influence on my tacrolimus level are my level of hydration and number of hours since my last dose of tacrolimus. I really focus on being well-hydrated the two days prior to my bloodwork. Also, my chloride level seems to give a good indication of whether I am dehydrated. Also, my tacrolimus trough is strongly influenced by how many hours it has been since my last dose. For example, if I take my tacrolimus at 9 PM and my bloodwork is at 7 AM the next morning, my tacrolimus trough will be on the high side.
Thanks! I’ll definitely focus on my hydration. I think I’m okey on hours between meds and lab draws.
Jayhawker
Hi same problem about hydration. Do you have have some tips to stay more hydrated or just simply drink more water. Im asking because most of the time even drinking a lot my body is not hydrated as it should be. Thanks
What is it that you're considering a lot? My transplant nephrologist has me drinking a minimum of 4 liters of water per day, and i usually go over it and land at about 154 oz in a day. I'm also supposed to drink water anytime i wake up during the night.
Wow 4 liters is a lot. I was told to drink 2 liters. Too much water can lower sodium level and that is dangerous for the body, too.
I wasn't making any recommendations, just relaying what my dr has me doing. Labs are monitored every few months or more frequently when needed, so all is well for all my levels of everything. Immediately going home from the transplant I was instructed to drink at least 3 liters of water per day, and then there were 2 or 3 times they increased it in response to slight elevations in my creatinine and left it there. This is just what keeps my transplanted kidney happy and thriving (along with all the meds, diet, exercise, etc of course). 😊
For my 13 year old grandson, 18 months post transplant, it has been stressed to us that the blood draw must be just prior to the next dose of Tacrolimus otherwise, the reading will be askew. Our nephrologist will not accept anything under or over that time frame. eg: Tacro dosing is 12 hours apart, in our case, 8 am and 8pm, therefore, we must time our labs for about 7:30 am before taking the next dose. That could be 7:30 pm, but our labs here are not open late.
I'm just starting to see the same thing on my Tacro level regarding hours between test and most recent dose.
I think the other issue for me relates to my IBS. I am experiencing fairly regular intestinal issues 60-90 minutes after taking Tacrolimus. It’s typically diarrhea. I’m usually able to get it under control using Imodium, but it likely adds to the ups and downs in my TAC levels.
I’m going to talk with my transplant nephrologist about this in my appointment Feb 5th. I wonder if switching to slow release Tacrolimus would help both calm my intestinal issues down as well as promote more stable TAC levels.
Jayhawker
Always with food or without . That can effect absorption . I don’t know for sure, but I think that may be why mine was fluctuating as much as yours. Sometimes I would only eat a bite others I would eat more. I am working on being more consistent.
Best of luck’
My 19 year old son is about 17 months post transplant. He had major fluctuations of tacro after stopping prophylactic clotrimazole after 3 months. They eventually restarted the clotrimazole and his levels now much more consistent.
I had big fluctuations, but mine seemed to be dependent on which lab I went to. My local lab (boondocks of Alaska) send the tacro to Mayo Clinic and those results are wild. The lab in Anchorage and at my transplant center in Seattle both do in house and I get consistent results and they both seem to agree with each other. I still do tacrolimus locally when I am not in town, but we don't make any changes based them.
I am 5.5 months post transplant and my tac levels are all over the place so they are continually changing my dose. Doesn’t seem to matter what I do. My creatinine levels are dependent on hydration but I have not seen a correlation between hydration and tac level. I do realize I haven’t quite hit the 6 month mark yet and have been told to expect this in the first year???.
I have not had fluctuations, but I do drink between 90 and 100 ounces of water a day. I use an app called Hydro Coach to monitor how much I have during each day. I believe doing this has stabilized my lab values. I take my medication at 9 AM and 9 PM each day and have been very consistent with that too as I have an alarm on my phone to remind me not to forget it. I get my labs drawn around 8:30 AM each time prior to taking my medication’s. So it will have been almost 12 hours when I get the lab work drawn. I am just over nine months post kidney transplant from a living donor and they have adjusted what I take several times to where now it seems to be very stable. I don’t know if any of this information has helped you, but I would encourage the drinking of water (not soda) and encourage you to maintain your hydration each day. I consider it a small price to pay for the gift that I’ve been given. Best of luck and keep us posted of how you are doing.
Thank you for your response. Part of the reason I am thinking hydration could be the culprit is because I have an intestinal problem that can cause diarrhea when it flares up. Of course, that causes dehydration. While I use Imodium to halt the diarrhea asap, it will still cause dehydration that can take a day or a little longer to fully resolve.
I’m going to increase water intake from 2800ml to 3200ml starting today.
I, too, take my meds at the same time (9:30am/pm) consistently. My labs are drawn at 9:15am
Hopefully this is a hydration issue. Hydration is something I can address…
Jayhawker
If you have GI issues, have you tried a probiotic? I don’t take one but often I eat Activia yogurt that has the same basic thing as a probiotic. My transplant doctor recommended that. I think it has helped. I also use Imodium if things become too troubling.
Also the Hydro Coach app is very helpful. You don’t have to buy the advanced version of the app, just use the free version. It keeps me honest each day. Again, wishing you all the best.
I had food poisoning and my stomach lining was so messed up and my tacro levels skyroc keted Once I healed my tacro levels settled between 5 and 7. Probotics are definitely a good idea or regular yogurt consumption. I had to eventually go a gluten free and dairy free diet. Lost 20 pounds I had gained during covid
. Too shortba distance from chair to fridge. Eventually got a treadmill.
I am 4.5 years post transplant. I was on tacrolimus for the first 3 years. My levels were like yours, wildly all over the place. They wanted to keep my level between 7 & 8 because I had to stop the mycophenolate after two months due to extremely low WBC. In the three years, I had over 90 blood draws; 12 were in the target range! I was religious about my water (2-3 L per day), and my team was stumped. The only thing they ever came up with was a coordination between diarrhea and wonky labs. I struggled with c-dif and they didn't want me taking Imodium for that. (To this day, I'm still on Vancomycin to prevent recurring attacks!) After a biopsy of my new kidney, which was okay, they switched me to belatacept infusions every 4 weeks. Ever since, I've been slowly feeling better. Now if I could just get rid of these UTIs once and for all, life would be just about perfect!
Best wishes to you!
P.S. I forgot to say that at the 2 year mark, they switched me to Envarsus, and while the fluctuations weren't as great (originally they had swung from 2 to 17 and everywhere in between; on Envarsus they were generally between 6 and 9.something, so much closer), they still failed to land in the target range. It was easier on my stomach as I recall, but I was having labs every two weeks at the max, and we all agreed that was no way to live. See if your team will try you on Envarsus. If that doesn't stabilize you, consider asking about the belatacept infusions. I've been on them since October of 2022 (it's now January of 2024), and feel the best I have since before the transplant. Best wishes to you!
Thanks so very much for sharing this with me. My team is stumped too. They are thinking there could be a correlation between diarrhea and these TAC fluctuations. In my case it’s IBS. I have a GI so will see if they have reached out to him for his thoughts..,
Jayhawker
My doc has me on dyclomine 20mg before each meal. 3x a day. It's made a big difference. I started 6 months ago. I am 8 years post liver transplant and on Tacrolimus.
My hubby had c-diff too and also utis. Antibiotics can destroy the biome in your intestinal and urinary tract. Maybe ask your team if it's possible to take probiotics to restore the environment. They've worked great for him. My hubby no longer has c-diff. And his uti situation is improved - they're around but at very low level so he isn't bothered by them and doesn't need antibiotics. Hubby is 2+ years post transplant.
I've been on probiotics for at least two years, maybe longer. They definitely help to keep my gut closer to normal. The UTIs are slowly coming under control. I have one right now, but it's the first in 5 months after previously having had 15 in 18 months, which is a huge improvement and blessing! It gets frustrating when it's one thing after another, but I choose to trust God and my medical team, along with playing the long game. It took almost 4 years to feel this good after my transplant, so another bump in the road is nothing to stress out over!
Those antibiotics destroy one problem but then create others. And then those transplant meds don't help either. I'm sooo grateful that my hubby's life is a lot more normal now that his stomach and urinary tract are happier. The darn thing is that it took a long time to realize that probiotics could help with that. But at least we now know. I wish doctors would be more proactive in that area.
Oh my, while in hospital in Sept they had me on IV antibiotics...3 hours every day. It caused me some bad diarrhea which is loads of fun when you are bed bound due to a drain tube in your back. I argued with a nurse about getting some meds for it. Finally one of my docs stopped by and took a stool sample...determined I had no biome and that the antibiotics were causing it. Stopped them and within a day it cleared up.
Was in for labs again this morning. I’ll see where the TAC comes in with the change in dosing. Hopefully it will be lower.
I see the nephrologist on Feb 5th. I’ll see if she’ll consider the slow release form of TAC. I suspect that might help level my TAC data as well as ease the intestinal upset the TAC is triggering. We’ll see how receptive she is …
Jayhawker
jay hawker,
I am a 27 year kidney transplant. My transplant was in Memphis, Tennessee.
A couple of years ago my Tacrolimus level elevated from 4.5 to 29. I could not recall anything that could have contributed to the change in my level.
After a couple of weeks of redoing lab, my Tacrolimus level was back in range.
I hope this information is encouraging to you.
I wish you continued health.
I have reviewed all my TAC levels since the transplant. I’ve had 4 times when they have elevated into this range but have come back down within 1-2 weeks. 🤞 Hoping that will happen again this time.
I’ve been pulled off Myfortic permanently by my hematology oncologist. Apparently because I have T-LGL leukemia (recently diagnosed) Myfortic was contributing my ongoing issues with CMV and low WBC counts. Since discontinuing Myfortic my CMV consistently tests “not detected.”
Nov 1 <35
Nov 8 <35
Nov 15 to date not detected
So, 10 consecutive weeks with CMV not detected following 2 consecutive weeks with it <35. The CMV is now in check. I should stress that pulling me off Myfortic is specifically due to the recently diagnosed leukemia…
My WBC is now in the normal range with elevated lymphocytes and low neutrophils along with mild anemia. These abnormalities are specifically related to the leukemia.
Otherwise my renal function has been very stable. Just need to get this TAC situation calmed down.
Jayhawker
Looking through the thread, I suspect your situation might be connected to your hydration and bowel situation. I know my hubby didn't like tacrolimus at all - it prompted immediate tremors, etc. - so he switched to Envarsus which is time-release tacrolimus. I wonder if doing doing that could even out your fluctuations. Might be worth asking your team.
Hi, I'm 2 years 4 months post transplant and my tacro levels have been mostly consistent except for a couple of noteworthy times. The first time, the transplant center and I discovered my only change was starting to use Parma seasoning. This is a vegan super food except one of the ingredients is hemp hearts, which apparently impacts tacro level, who knew! Replaced that with nutritional yeast instead and tacro levels returned to normal. One thought is to keep a food diary for a week and ask the transplant dietitian, nutritionist or pharmacist to go through it.
More recently I was on 10 days of fluconazole, which the center anticipated correctly would impact my tacro level, so we ran labs frequently and adjusted the tacro until things evened out.
I monitor water intake by putting 80 oz in the fridge at bedtime and knowing I have to go through that the next day. Plus I frequently add ice to the water, plus drink nut milk or a smoothie. I have an alarm midday to check that I finished half the water. Just some ideas. I hope you and they figure it out sooner than later. Best wishes.
I’ll try the food diary. I’m hoping this can be resolved over the next 3-4 months. If it is I think the transplsnt center will turn me back over to my regular nephrologist for post transplant monitoring and I’ll only be in the transplant center once s year. That would be so very helpful as I now have to battle my leukemia. Fewer labs and doc appointments related to the transplant would give me greater flexibility time wise for tests and treatment related yo the leukemia.
Jayhawker
A note about GI issues. Since the beginning of my transplant meds I had daily diarrhea and an unsettled stomach. After much discussion with transplant staff, consulting a gastroenterologist, getting a colonoscopy and endoscopy to rule out other issues, I've ended up with a collection of GI meds that allow me to get out of the house in the mornings. Here's the list. As soon as I get up in the morning I take two imodium. Then with my other meds after breakfast and dinner, I take famotidine or Protonix, BeanAid, simethicone, and about once a week need a dose of Zofran for nausea, and about twice a month need a dose of Gaviscon for acid stomach. It's more than I'd like it to be but at least it's working. Before my transplant I didn't exactly have an iron stomach anyhow, so it's not surprising.
mine was up and down for almost three years. Between 4-9. Switched to Envarsus and it’s been stable
I am 2+ years after transplant and on Envarsus. My tac level is still all over the place: 4-10. I go in for labs every 2 weeks because I’m also anemic and on Procrit. I did see a correlation between diarrhea and low tac level previously, but even when my GI tract is behaving “normally”, my tac is still everywhere.
Hydration only affects my creatinine. I’m very well hydrated now, but my tac level still fluctuates. My transplant team make changes to my Envarsus only when my tac level are at the same high/low for 2 labs in a row. It has been a roller coaster. I’ve been up and down 4-6mg. 😔
I am almost 7 years post. My tacro levels changed a lot for the first few years and stayed steady for maybe 2 and are fluctuating again now.
What generic are you taking? I highly recommend reading the book Bottle of Lies about the Indian generic industry. It is an eye opener.
I was on Accord for the last 5 years and with the recent warning from the FDA was switched to Ascend. I had a zoom chat with my Mayo transplant nephrologist a couple of days ago about this very subject. We are going to monitor it closely.
Lots of options to explore.
Fluctuating Tacrolimus levels could be related to drug manufacturer. For example, Tacrolimus manufactured by ACCORD had exactly this issue and recently it was officially confirmed.
Like other replies stay hydrated. If you're 5+ years into your journey I've learned a slightly increased tacrolimus level often relates to a slightly increased creatinine.
make sure your getting enough water i recently got dehydrated and had that very same effect Tac went up to 12.6 after being hydrated it’s back to normal
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