Hope all is well!! i got my transplant in july 2020 and at first my levels of tacro where high between 12-15. by the time my meds were adjusted they were between 8-10 (as wanted) and would tolerate above 7 without changing my meds. By mid august i was on 1.5 mg twice a day. However, my levels dropped down to 6 beginning of November and brought up my tacro to 1.5 mg am and 2 mg pm, then 2mg twice a day and now 3 mg twice a day. I asked the team and don't really have an explanation for this and all labs are perfect. My creatinine is 0.6 and no sign of infection, no new meds. i started a supplement for my hair growth but was approved by my nephrologist and transplant pharmacist and...
Has this happened to anyone that your levels dropped for no reason? i'm kinda new to all this and am kinda worried
thank you!
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Amyb93
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Do you take the tacrolimus in 12 hour intervals, I had the same issue, tac levels high on 2.5 mg twice a day then reduced to 2mg twice a day. My tac levels went from 15 to 8 and are stable about 7-8. Your levels went down because you had a lower dose.
Yes, i take tacro twice a day. At 8h30 and 20h30. My tacro levels were stable between 7-10 for 2 and 1/2 months with 1.5 mg twice a day and suddenly the levels dropped to 6 and 6.4 beginning of november.. so they brought it back up to 3 mg twice a day
Get the blood tests done at least twice a month. Very high tac levels and increase your creatinine and damage the transplant, so keep an eye on the tac levels, because very high levels are toxic to the transplant. I was told this by a kidney transplant surgeon who coordinates all types of transplants.
i go every week as i'm only 4 months out of transplant. Also go every week because my donor was + for CMV and i'm not and i just finished the meds in prevention of cmv so they are checking to see if the virus pops up in my blood work. My transplant team said they rather have my tacro on the higher side the first year than too low to prevent rejection.
Are you on valganciclover, I take one tablet a day, I have to take it for another 3-4 weeks. I’m already off prednisone, omezaprole, Aspirin and Paracetamol and codiene.
Yes i was. I was on 2 tablets for the first 100 days And now we check for the cmv virus (transplant protocole here) I’m still on prednisone (5mg) and will most likely be on it for a long time (that’s the protocol here), pantoprazole is done.
Are you on mycophenelate, surprised your still on prednisone is it to prevent rejection, only people who had acute rejection had a long prednisone course, ask them about long term prednisone effects.
Yes, i take cellcept, tacro and prednisone. Yea it is to prevent rejection. Here in Canada at my transplant center, they told me that it is how they do it. Most patient here have three anti-rejection meds prevention.
In the USA, it is INcorrect to say "only people who had acute rejection had a long prednisone course, " In fact, steroid is the proven and true anti-rejection medication that a majority of transplant patients DO take for life. Please be careful how you communicate these information.
Also, the very high tacrolimus levels that could cause kidney damage you wrote about are at level of 20 and higher. Her level and most of ours are nowhere near that. Again, unless you are working directly with her clinical team it is very important to NOT give other patients the impression that their doctor's protocol is "not correct". Thank you.
Not true either if you are sensitive my tacro level at 11 destroyed 10 percent of my new kidney so everyone is different and you really need to advocate for yourself as my team kept thinking same thing till i demanded they investigate further and thank goidness i did or my new kidney would have been killed by the tacro
I am still fighting rejection almost 2 years now, IVIG and my tacri level was 3-4 then got bumped up to 5-6. Now I’m taking 2mg twice a day. In terms of drug levels dropping, I’ve never seen that happen before
This has happened to me. I am about 1 year and 4 months post transplant and my tacro levels kept fluctuating.
I am on the once a day Envarsus. for the first year my pattern was similar. the biweekly tests showed high tacro so they reduced the dose. After 2-4 weeks it dropped and so it was raised again.
(My highest tacro was 13 and lowest was 4). In the second month my doc even did multiple tests in the day to understand the pattern. My creatinine has been generally stable but it rises slightly when the tacro is high. But then when the tacro goes down, the creatinine goes down too.
It started to stabilize a bit after one year. Meaning it does not vary so much but I still get my labs done once in 4 weeks to monitor.
Thank you this helps! About envarsus, have you had any side effects from it? I’m on prograf twice a day and the tremous i had stopped. Now dealing with hair loss but don’t know if its froM the tacro or surgery...
I have had of side effects but cannot say if they are "Envarsus" related or general tacro and cellcept related.
- I had hair loss that most other have experienced. Situation is a lot better now
- Some days I have a lot of energy and some other days I am totally exhausted
- I have days when I am light headed etc.
I cannot say they are Envarsus related. We asked the transplant team if switching to twice a day is better because of the variation inn tacro. They did not recommend that at all. They said that there are less side effects with Envarsus. But more importantly, the risk on missing a dose is lower also. (since u have to remember to take it only once a day)
Mine I currently 20.1 and I'm 2 years post transplant, yours being a new kidney will fluctuate until the doctor can work out what the best dose is for you
Mine have been a lot like yours. It is unique to every patient and every Transplant. I was constantly comparing mine to others and it was not helpful overall. I am 2.5 years post tp and now take 2mg in AM and 3 mg in PM in an effort to keep my levels between 5-8. I used to take 5/5 amd even 6/6. I was highly sensitized and remain a rejection risk. If you have confidence in your team/transplant center, trust the process and do exactly what they tell you. Every patient is different and every patient metabolizes the meds differently. Most of all hang in there and give it time to all settle out. Celebrate that creatine most of all that is awesome!!
Thank you! I really trust them. I was hoping to maintain a low dose to avoid side effects. However i’m just happy to be healthy again my creatinine has been perfect ever since transplant, so i’ve been lucky for that!
I’m so glad you do! And the hair loss tends to go with the territory but if it’s like mine it will slow down. My hair is def not what it once was but it’s fine in the grand scheme! God bless and good luck!
My tacro was all over the place but if i went over trough level of 7 my creatinine would jump too high.My body super sensitive to it.btw what supplement you on for hair growth.
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