Anyone else have to stop taking tacrolimus due to kidney toxicity?
I am two years out from my deceased donor transplant. At one year, my kidney function was normal. Now, at two years, my creatinine is 2.2 and my eGFR is 31. After MANY tests and multiple biopsies of my transplanted kidney, they have decided that the tacrolimus is causing this and they want to switch me to IV infusions of Belatacept.
Anyone else with a similar experience?
Yes, tacrolimus toxicity should be dealt promptly. I have seen many people shifting to everolimus which is less toxic.
What are the symptoms of Tacro toxicity ?
I’m not been having any symptoms except decreased exercise tolerance, which I think is due to my elevated creatinine.
The problem is that my creatinine has been steadily increasing since last January. They did blood tests multiple times to look for rejection (negative), multiple ultrasounds to rule out technical issues (negative x 3), a renal scan that was read as consistent with chronic rejection or recurrence of the primary disease process (to which the nephrologists said no), a transplant biopsy in June that only showed mild glomerulitis. The biopsy was repeated two weeks ago, and showed severe arteriosclerosis, which they think is due to the tacrolimus.
Full disclosure - I am a professional patient, not a doctor. According to every study I read, after 5 years on belatacept your GFR goes up and on Tacroliums & cyclosporine it goes down. I have long heard both tacro and cyclosporine can be toxic to your transplant, I was also told that the rate of rejection was 10% on cyclosporine and tacrolimus but 25 % to 30% on everolimus. No idea about belatacept.
Thank you ShyeLoverDoctor. I appreciate the information!
Hi not an answer to your question sorry. Just wondering the exact brand name of your belatacepet? Is given as infusion every 30 days? Is granded by your health care or do you have to pay? Thanks
I see the transplant nephrologist’s tomorrow, but my understanding is that the brand name is Nulojix, and is given by infusion every 28 days. I have original Medicare ( not an Advantage plan), and, after talking to them, I THINK that it will be covered by Medicare Part B, as it is given in an infusion center.
Hi Hawk - I have heard that tac can be hard on your kidneys. I had to switch from tac to bela for a different reason though…the tac caused my heart to race.
I was concerned about sitting in a chair to get an infusion every month for rest of my life; however, bela has really been great for me. I drink water before and during, as it keeps me from feeling tired after the infusion.
Best wishes to you!
D
Thank you Denise-80! How long does the infusion take?
Belatacept infusion is 30 minutes. I’m on my way right now to get my monthly infusion. I’m only 2 months post transplant and still on tacrolimus but they plan to wean me off.
Thank you!
For me, the whole process usually takes 45 minutes to one hour depending on how busy they are. The nurse checks you out to make sure you are well, IV is started, medicine is mixed, and then administered for 30 minutes. I would have asked for this med years ago, if I knew it was available.
hello am i correct to say this is only available in the us … would u know what the side effects are from this med plz
I live in the US, so can’t comment on other countries. If you consult the Mayo Clinic web site, the potential side effects of Belatacept are SEVERAL pages long! However, from the comments here, some people describe flu like symptoms for up to 24 hours, but most people seem to tolerate the infusions well.
Have you ever been on hemodialysis ? That’s four hours three times a week. Every week. I don’t understand how that possibly compares to a single day per month for an infusion.
No, fortunately I got my transplant prior to needing dialysis, but I agree with you!
I have been on Belatacept since my transplant 2 1/2 years ago. I can see no side effects from it. Yes it’s 30 minutes in the chair once a month, but that’s so much better than dialysis.
I’m under 65, so when my Medicare runs out in six months, I’m not sure what I’m gonna do about the high cost belatacept. I know I’m not going to take Tacrolimus.
I believe Bristol Myers Squibb is the pharma company that makes Belatacept. Maybe they have a program that you would qualify for that would reduce the cost? Might be worth contacting them. I have been on Belatacept too and really like it. Also, maybe your infusion center and/or nephrologists could direct you to possible resources?
Thank you Oceansideup! I did contact the company. However, unlike other drugs that I’ve received a co-pay card for (like my Jardiance), the issue is that this is billed not as a drug, but as a hospital cost, due to the infusion.
I got an injection of Neupogen in an infusion center a few months after my transplant, and that was covered, so I am hopeful that Medicare and my Secondary will cover it!🤞
Medicare will cover it. It is covering mine. My problem is that I’m 60 years old and in March next year I lose the Medicare. You get Medicare for three years from the time of transplant. If you’re not 65 by that time, you lose it.
You’re right about it being billed as a hospital expense. My normal insurance will not pay anything towards it. My doctor is working with billing to see what can be done.
Thank you LavenderRabbit! That’s one less stressor!
Thanks Oceansideup for the idea to contact the company. I will look into it.
Yes, they were nice to me, I just didn’t fit their program “
Thank you LavenderRabbit!
Try the link above. It may help with the copay. Your doctor may need to submit. Mine did.
One more thing, I get my infusion at an infusion center, not a hospital. Private insurance does not treat as a hospital expense for me and covers it.
I hope this helps.
I didn't have to stop tacro, but I very much wanted to given its long-term harmful effects on the kidney. I've been on Belatacept for over three years and have had no problem.
By process of elimination, I’ve been pushing the nephrologists that it had to be the tacrolimus. I did get them to lower the dose, but that didn’t help. Hopefully, this is the answer!
Hi. I'm sorry you're experiencing decreased GFR, especially so early on. I switched from Tacrolimus to Belatacept in 2016 and even though infusions knock me a bit for about 24 hrs it's so much better than Tacrolimus's side effects. I lost my first transplant after 15 years (living donation from my dad) due to Tacrolimus nephrotoxicity. For my second transplant (no dialysis in between the two) they needed to increase my med levels (same meds: Tacrolimus, prednisone, myfortic). My creatinine was always a bit high and after three years started to increase. But it was the drug's neurotoxicity (tremors, anxiety, etc.) that pushed me to replace it with Belatacept. SUCH a difference. My creatinine immediately lowered to normal and I could eat soup without spraying my family at the dinner table.
I'm now on Belatacept, maintenance level of prednisone, and Sirolimus (changed from myfortic to sirolimus a couple years ago because myfortic caused ulcerative colitis) and so far so good.
Good luck to you and your kidney!
Thank you BlurplelsBest ( would like to know the background on that moniker)! I really have had minimal neurotoxicity, at least that I am aware of.
From my research and what the nephrologist said, it appears that my kidney was from an older donor and had some disease to begin with. That, along with my older age, made the kidney more susceptible to the tacrolimus.
I found a study on similar patients, and their eGFR improved by about 10 points, so my eGFR (currently 31) could go up to around 40.
May your GFR increase!
Blurple (blue-purple) is my favorite color. 
Thank you! I’ve done all the paperwork. Just waiting to start. And thank you for the explanation! 😊
Yes right after transplant about a month in my creatinin wpuld go up and up ic my tacro level was above 6 and they kept sauing my levels needed to ve higher as a new transplant(3months in) after tracking the correlation of when i myself took less tacro dose and the subsequent drop in creantinine I watched my bloodwork like a hawk as my idiot transplant team didnt,i thought hey i think this tacro not good for me so upon doing a bunch of research myself and them finally ordering a biopsy abd finding out tacro had wrecked 10%of my kidney,they were going to switch me to siroliuoms,but after me talking to my transplant pharmacist(the only one in the team with a freakin clue) got me approved for the belltacept and so much better with like almost zero side effects.If i gadnt fought myself and been proactive those idiots would still gave me on the tacro
Thank you Parkerbarker. I should have more aggressive. Don’t know how much of my kidney will recover at this late date.
I switched just after a year from what I thought was either CiPs or toxicity, but mine was tertiary because my kidney function itself has been great. Mine was from the tremors, most importantly for me was the debilitating "Brain Fog", and the joint pain was pretty bad too, although that has become my current demise. It's a neuro and nephro-toxin. I learned early on because I didn't understand why they put a timetable on the life of our transplanted kidney? That was one of the main reasons was due to the toxicity of the immunosuppressants. Belatacept is not toxic to the kidney or present the same issues with the brain in my experience. The only side effect that I truly noticed, well I guess I should say that I KNEW was due to the Belatacept, was that I started feeling very "lethargic". I was actually pretty surprised to see that listed exactly as one of the first side effects! I did switch after another year due to extreme joint pain and development of psoriasis and psoriatic arthritis, which I in turn realized it just "opened the gates" for it to surface. It didn't actually "cause" it.
Thank you PKDPostXplant2020! Was the lethargy all the time or just around the time of the infusion?
For me I was just a little bit lethargic day three after the infusion the first couple of times but other than that I've had energy on the bellatassic
Thank you Parkerbarker!
While transplant patients are fortunate that belacept works as an additional immunosuppressive drug to prevent rejection, it is extremely important to know it is not a miracle treatment like some people seem to think here. Please carefully read all of the KNOWN potential serious side effects that you may experience both from short term and long term use: medlineplus.gov/druginfo/me....
Only a licensed medical professional can properly determine if it is the best course of treatment for any patient.
Thank you LisaSnow! As my renal function is decreasing monthly at only two years after surgery, I feel as though I have no choice but to try this! I am well aware of the potential complications. I had to sign an informed consent to go through with this.
I must admit that I always thought that it was strange to use a nephrotoxic drug for immunosuppression! Postop, the surgeon said something to the effect of “you will have a good kidney until the tacrolimus kills it”. In this case he was absolutely correct. Older recipients of kidneys from older donors are apparently more susceptible to tacrolimus nephrotoxicity, so perhaps he was trying to tell me something!
I hope this is going to work great for you! Don't be discouraged, so many factors including recipient／donor age and genetic background can affect drug's adverse effects. There is simply no formula to predict them accurately for all patients. I am so glad they caught it early in your case and that additional treatments are available. Let us know how it goes!
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How did you know you were losing your kidney? 
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Over fatigue feeling plus tremors on hands
Belatacept headache?
