Liver
Tacro caused kidney failure
December 1, 2022
in Liver
I had a liver transplant after 1 year post transplant I was diagnosed with stage 3 kidney failure. Made my transplant coordinator aware of it and she just down played it. Now four years post transplant I am in stage 4 kidney failure and just placed on the transplant list.
I started complaining about my meds and side effects etc. They just out right admit that the tacro caused my kidney failure. I ask them with no type of response from them why they did not change my meds back when I made them aware of it?
I have done labs every three months and they monitored my gfr going down each time.
Has this happened to anyone else on here?
1 - 20 of 20 Replies
Dang, that's terrible. I'm a kidney patient, so I was already having kidney problems. After my transplant, they kept my tacro levels way too high for my body and I had delayed graft function for 7 weeks. I've recovered to a creatinine around 1.8ish. So I'm stable, but I believe that the tacro messed with my new kidney. I'm so very sorry this has happened to you. I really hope that you find the answers you need.
Hi Rodney,
i am sorry to hear this, how much tacro are u taking? I to worry about my kidneys, my kidney numbers are stable right now they tell me. What is your GFR number. I have labs monthly and am 2yrs. LTP.
Tacro levels should be between 7 and 10. I was able to lower my tacro dosage by 1/3 by taking CBD oil, which enhances the effects of tacro. DO NOT do this without working with your doctors and only take CBD from a very reliable source. You'll need to do labs every two weeks, at least, until you find the optimal dosage. 5 years post liver/kidney.
A_Ray, that is brilliant. :)
Is the lower the tac number the better! I get quite confused about this, LTP team tells me they r not concerned about tac numbers only your lab numbers!!
What have u all heard.
💚😊
@Melsamm now that I’m 4 years out, they are ok with my tacro levels between 5-7. The higher the tacro level in my blood, the worst my creatinine is. I go do labs mostly to keep track of my tacro levels.
Interesting, I think that’s why I have to do lab’s every month is mainly for my creatinine levels now. They have never been the same since LTP. I had an acute rejection over Thanksgiving so they have increased my tacro again😩 and back on prednisone. Such a challenge to tweak the meds and keep us TP patients safe/healthy..💚😊
Transplant Patient
@Rodney i am so very sorry for you but unfortunately your case is the norm vs an anomaly! Tac does cause fibrosis or scarring of the kidneys and especially in transplanted kidneys that is very detrimental. For those w other organ transplants like you, it is also common to deteriorate in kidney fct over time when on tac. Values (fk levels) of immune suppression driven by tac are important to measure monthly chronically, and my Drs true to keep me between 5-7, but in kidney only you can perhaps even go a little lower but obviously not on your own! I wish we had better drugs than tac - that is why we work so hard to push industry to develop them!.
It's actually interesting to see everyone's tacro levels. My sons tacro level sits very close to 2 at 6 years post transplant and his kidneys are doing ok.
I am very sorry to hear that tacro in your case led to kidney failure. I do know that tacro is processed through the kidneys. Sad yours took a hit from it. But I will keep a closer watch on my kiddos GFR levels from now on and advocate when I see changes.
I wondered how you were doing. I'm so sorry you went through a rejection episode. Here's praying they get the dosing right to keep you healthy!
Thank you, labs still not where they need to be , increased tacro again, will have to have a liver biopsy. Feel so down b/c I just had my 2yr. liver anniversary, was doing great.
I am a fighter determined to get thru this bump in the road😊💚
Sending you lots of love! This road can be so stressful. You ARE a fighter. That's why you've made it this far. Please keep letting us know how we can support you virtually. Keep us updated too!
Hugs/love to all too. Appreciate each of u all for your support, it really helps💚
I am on and have been 1 mg in the am and .5 in the pm. I cannot remember having a level over 6 they like me around a four. They are weaning me off now to sirolimus only. They stopped everlimus also and changed it to sirolimus
My gfr is 18
😩 sorry to hear this for u. It’s just so frustrating I know.
Transplant Patient
@Rodney - so sorry to hear about the situation you're in. As @Karin & others have indicated, compromised kidney function is a reality that most who are on immunosuppressive drugs have to deal with. 😥 The other significant side-effect of being on immunosuppressants is of course, the risk of getting cancer (skin cancer seems to be most common).
@Melsamm - so sorry to hear about your challenges too.
Reading all these posts reminds us all - eventhough many of us are solid organ recipients, we're ALL unique and no two experiences will ever be identical (no matter what the organ).
Sending everyone positive vibes & prayers too.
Ps. I'm a heart recipient (since April 2015). Luckily my dosages of immunosuppression have been low. My kidneys were compromised even prior to the Tx, so I'm always a little on edge. My Creatanine is in the 1.5 - 1.8 range, it's apparently "OK" because that is my range & it's steady at that.
Currently, 0.5 mg × 2 daily of Tacro(Prograf)+ 250 mg ×2 daily of Mycophenalate (Cellcept). My expected Tacro/FK level is 5 - 7 (mine's at 6 👍🤞 ).
Thank you, lab recheck in a week 🙏🏻 numbers will be down.
I am 5 yrs post transplant. I and still taking 500 mg of cellcept am and pm. That’s 1000 mg a day! Does anyone else take that much?
Hi Debra! I'm 7years post-transplant and I have the same cellcept dosage. Right after transplant I was taking 1000 mg day and night and ended up with the BK virus so they lowered it.