My transplant was 9/30/22. My tacrolimus trough labs through my local hospital are sent out to Mayo. They consistently come back 5s and 6s right where My transplant team wants them. When I get it checked through a hospital in the big city (3 1/2 hours away) or at my transplant center (3 hour flight from the big city) they both come back in the 9s (way over medicated). Have any of you had issues getting accurate tacrolimus troughs?
I am also considering switching to cyclosporin because of hair loss. How do the two compare? Side effects, testing, and other issues? I know both are poisons, but needed to protect my kidneys. I also know that side effects vary, I'm just trying to get an idea of what I may be trading for.
Thanks
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This is a really good question. How accurate are any of the tests . It is a concern and particularly with a drug like Tacro.
Re hair loss … mine came back really healthily took about a year , I lost a lot around around the 5th -6th month.
I changed from MMF to Azathioprine and didn’t regret it one bit but there is always that worry in one’s head head about rejection or change in health. I also persuaded the Drs to stop Prednisolone and that has been a blessing.
No answer to your question … but good luck with it all. It’s complex isn’t it !
I do tacrolimus level testing in the same lab. tacrolimus is better medicine than cyclosporin, they are not poisons, with tacrolimus the kidney can last for 15 years.
Dear Balap. Where did you get your information? I've been on Tacrolimus for 8 years after a liver transplant and it is very hard on the kidneys, I'm stage 4 CKD. I haven't researched using it after a kidney transplant, but logic makes me think its going to be the same risks. I'd be interested if anyone has additional information
Sorry to hear about your CKD. I have known several people on Tacrolimus who are 10-20 years post kidney transplant. I'm 10.5years post kidney transplant, Tacrolimus damaged my kidney to some extent, but still going good with normal Creatinine.
Was on tacro and found to be toxic to me,never went on cyclosporin but was switched to belatacept infusion once a month.So much better and no trough levels to check and as someone who gets side effects from everything, had minimal for the first 3 infusions then none.If you can get that instead I would look into that.
I have had blood tests completed in 2 major hospitals in my area and they rarely match. I leave it up to my doctor to sort it out. And have not been disappointed except when I was not being regularly tested for myfortic levels. I was over prescribed and having hearing difficulties.
My transplant was on 11/06/05 (almost 18 yrs.) I have always taken tacrolimus/Prograf. My doctor told me to always be sure to have 12 hours between my last dose and my blood draw. If less time has passed, the result can run high. If more time has passed, then it can run low. I always heard that tacro is better than cyclosporin, and I also heard that cyclosporin can cause unwanted hair growth (such as on the face).
Well, it is as close as you can get it to 12 hours. It doesn't have to be "on the dot", but it is best not to go more than about 30 minutes more or less either way. I take my tacro at 8:45 p.m. the night before, and schedule my labs for 8:45 a. m. the next dau. I do realize that some places don't offer scheduled lab appointments. Just let your doctors know if you took your dose earlier or later than that 12 hour window so they can estimate the true results.
Agreed. Also fasting and staying medication free before the blood draw is extremely important. If they aren't controlled for the trough levels will simply be off.
I had two different tacro draws within 3 days. Both were drawn 11 hours 55 minutes after last dose (I'm kind of a nerd about tracking things). One was 5.1 the other 9.0. Ironically, I got the results from the second lab at about the same time as the first. I expect to variations from one draw to the other, but that seemed excessive for just 2 days apart. I also looked back at previous draws, and the variance was consistent. The hospital labs (2 different hospitals) agreed with each other, and the send out lab that wasn't processed for several days was lower.
As far as letting the Dr sort it out... my new Dr is great, and just as concerned about this as I am. But, if I had just let my old Dr sort it out I would still be suffering through uneeded side effects and not have my transplant. We have complex health issues and our Dr's have lots patients to remember and some just don't seem to care anymore. So, we have to be our own advocates.
I should also mention that all three options (Tacrolimus, Cyclosporin, and Belatacept) are considered effective and safe*. They have different side effect profiles and work in different ways. My Dr and I are trying to decide which option is best for me. What we choose for me does not mean a different choice is wrong for you.
I really appreciate hearing about your personal experiences (especially the Belatacept, I don't personally know anyone using it).
* safe is a relative word, all of these meds do damage to our bodies (which is why I call them poisons), but that damage and associated risks are generally considered to be less than the risk of rejection if we don't take them.
I’m 5 weeks post transplant and the transplant protocol at my transplant center at Emory University Hospital requires monthly Belatacept infusion for life. I believe that over time they stop the Envarsus (tacrolimus) and continue low dose prednisone and Cellcept. I think the Belatacept has fewer side effects and reduces the number of daily medications. I had my first infusion last Monday and felt fine afterwards.
How do you get the labs to draw you at an exact time? I’ve never had that luxury. I wait with the general population . Even at the a transplant lab they were an hour late.
It is hard to do sometimes. I can usually time it within 1/2 an hour either side of 12 hours. I also try to go really early when the lab is not as busy. In the two examples above, I went earlier than my target time and it was just lucky they got to me that close to my target.
My transplant center gives me an hour leeway either side and my local nephrologist agrees with that.
I have 2 thoughts with crowded labs.
1. At my transplant center, they us notify staff that we are transplant patients. We then get put in a cubicle immediately and do not have to wait in a crowded room. They still do our draw in order though.
2. My local hospital is small enough that there is never a crowd and usually the only reason I ever have to wait is that they lost my lab orders (a continual problem).
If the two labs use different standards, of course their results will be different. The key is to maintain a consistent level that yields protection against rejection, and that is why using the same lab and test trough level regularly are the safest way to protect yourself, especially if you are still within two years from having had a transplant.
Consistent protection without over suppressing the immune system and causing too many illnesses. The range that we consistently stay in is important. The question is, which one is accurate? I trust the big city hospital more than my local podunk lab. So, I get to 3 1/2 hours each way to do labs from now on.
The two labs shouldn't be that far different, or else what is the point in having a standard.
If your speedometer says 55, but the Troopers radar says 105 there is a problem right? Two different tests, but they should both be ACCURATE enough to keep you safe.
The standards I was referring to is the lab specific and used in the assay kit. Each lab can choose the brand of preference kit and the reference range may differ from manufacturer to manufacturer. While technically neither may be wrong (and they aren't wrong if you get the same numbers from each lab at multiple times), which lab you should use is the question for your doctor because they will help you decide on one that the clinical team uses most and trusts. The medication dose decision is made by your clinician so their input on which lab they want you to use is extremely important.
I guess you really don't understand what I'm saying! This is getting very frustrating.
1. I am working with my Dr and transplant center.
2. I am taking a day off work to drive to the lab that can do my labs (that my Dr and transplant center recommend).
3. I understand that different labs can get different readings.
4. I understand that I can get different readings on different days.
5. One of these labs does NOT get accurate lab results for this test (I am not the first at this lab to have this problem).
What I asked was, did anyone have a similar experience! I did not ask you to persistently tell me to blindly follow my Dr's orders. She trusts my feedback and experience and I trust her medical knowledge and experience. THIS IS NOT THE ISSUE.
The issue is, errors like this can kill somebody. I was asking for others to share their experiences. I appreciate those that did. I won't decide on a medication based on their message. I is comforting to know how their experiences went.
I am sorry that I may have misunderstood your question. I personally never tried two different labs so I don't have anything useful to you to share. Take care and I hope your medical team helps to sort it out.
I had my transplant on 10/13/19, right before the pandemic hit. I was off work for 3 months, so I could have my labs done at the closer, satellite office of my hospital, or go into Seattle to my hospital. Once I returned to work, I either had to be the first one when the lab opened at 5:30 so I could start work on time at 6, or go to an outside lab within walking distance of my home on Saturday. After being late to work twice, I switched to Saturday draws.
I definitely noticed differences in my readings, but looking back, I couldn't get a stable tacrolimus level for love or money. We'd increase my dose and the levels would fall. We'd decrease the dose and the level would rise. And I don't mean tenths of a point! My target range was between 7 & 8 because I had to discontinue the mycophenolate in December, due to virtually no WBCs. My tac level would swing from 2.9 to 13.4, even after I was laid off when the pandemic hit and I could return to my hospital or the Eastside Specialty Clinic, which is part of the University of Washington system.
I was having blood draws every other week, followed by dose adjustments. This went on for three years. In over 90 blood draws, I had 12 that were in the target range!! I kept adding doctors to my team, trying to figure out why I couldn't get a stable level, and the best guess was that the constant dose adjustments contributed to my severe GI issues. A year ago, I was switched to the belatacept infusions and my GI issues magically disappeared! My creatinine level dropped almost a full point (it hadn't been much better than before the transplant) and I feel a whole lot better now!
So my question to you is, when your levels came out SO different, were you having any GI issues? Diarrhea can cause your food to move thru your system so fast that more tacrolimus is absorbed than usual, causing your level to rise. (This is my best recollection of the "explain it me like I'm a 10 year old" synopsis I was given. I hope it make sense to you. If not, check with your team and I'm sure they can make it clearer.)
In any case, best wishes to you. Keep us informed of what you learn, please.
Thank you. I didn't have any different symptoms between the different labs, especially the two that were only 2 days apart. I but did have symptoms of excessive immune suppression that my Dr's were trying to figure out.
My Dr has decided to switch me to something else (probably cyclosporin, but Belatacept is not off thee table yet). However, I can't switch to anything else for a while yet. I had a minor surgery that needs to completely heal before I can switch.
Since my hubby's transplant center is two hours away, he gets his labs done at Labcorp near our home. Although there's a difference in lab report presentation, the results have been similar. My husband has also used Quest Diagnostics in the past with no issues.
I hope you'll have resolution soon. It's my understanding that Tacrolimus has the best outcomes for transplant longevity if a person doesn't develop issues on it. But if that does happen, then I've noticed candidates may be put on Betacept infusions. (It's nice that the Betacept doesn't seem to produce diabetes like Tacrolimus does.) Sirolimus predates both Tacrolimus and Betacept and may be an option too. My hubby is on Envarsus - a type of controlled release tacrolimus formulation which helped to smoothed out his glucose and high peak tac levels which were sky high at the time. I hope you let us know how your situation plays out.
Make sure that when the local lab does your draws its at the 12 hour mark. So for me I take my tacrolimus at 7 am and 7pm. So I pay attention to the exact time I take my tacrolimus at night so if it's like 7:04 pm I don't get drawn tell 7:04 am. Also, I ended up shaving my head to a buzz cut because of hair loss. I wear wigs and my hair is slowly coming back but I do see some thing spots. I don't know anything about the other medication. I was told to just deal with the hair loss.
Probably does not apply in your case but I had stomach issues after food poisoning and it took several months to get my tacro level back to normal. I often wonder why so many doctors have different protocols. Do medical school promote their own protocols? You would think there would be a general consensus. Or do they treat each person as a guinea pig to see what works? It's great to get a transplant but was really not ready for all the decisions I would have to evaluate about medication and treatment with little expertise.
Because we all are different on genomics, histories of medical and infection exposures, causes of ESRD, transplant origin and donors' health histories. All and more factors play a role in how our bodies metabolize drugs and risks of developing side effects. Additionally, our lifestyle factors (how we eat, how much physical activity we do, how resilient our mental health is), body weight and how healthy our non-transplanted organs and systems are also continuously influence our bodies daily. Our body is a miraculous wonder and not a machine, which means a variety of treatment options need to be made available to help everyone thrive and be successful with treatment outcomes.
I’ve had bouts of IBS during blood draws. It’s interesting to me that the facility I had the Transplant at, in Transplant department, has had me wait the longest, sometimes an hour. I have felt like a guinea pig also being assigned to new DO’s and/or new nurse practitioners. I just do my best and make them aware of things.
Hi. My tacro trough was within normal limits at transplant hospital and very high with my local lab. It was the same with my kidney labs pre transplant. My local neph goes by local results and the hospital uses theirs. It is very confusing.
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