Hello. Has anyone had a rejection / episode? If yes, what were your symptoms?
I am barely two weeks from my 5-year post and 3 days from my doctor visit, they are concerned about falling GFR and rising creatinine which has slowly crept from a 1 to now, a 1.36. my GFR has gone from a 57, to a 40 since January. Labs are currently taken every other month, and I have no other symptoms. Have not had any recent illnesses, and no exposures to anything odd. Thank you in advance.
I'm sorry to hear your problem.
high Tacrolimus level is the usual cause for increased creatinine
what are the tacro levels when the creatinine was 1 and 1.36
In the early transplant, BK virus can cause increased creatinine
.
dehydration and BP medicines can also be the cause
any increase in weight and BP? new edema in legs?
creatinine
1.36 is a decent level
Hi Tacrolimus trough level.does not correlate with creatinine. While extremely high tac level can lead to renal toxicity that is a VERY high level, above 20 ng/ml in the whole blood. Most of the USA patients (at least one year out of transplant) are expected to be on a trough range between 5 and 12, so unless the patient has been exposed to a high level for a long time, it isn't likely to be the cause of the gradual creatinine decline.
Thanks. TAC runs around a 5 for me, and it was a5.8 at last labs. BK and CMV both negative. No BP meds, and no dehydration. I do have about 10;bs of unwanted weight but blamed this on hormones. No visible edema. A 1.36 is not bad but it has gone from a 1, to the 1.36 in the last 4 mos. GFR has steady fallen in same time.
Hi Donald, sorry to hear your dealing with this unknown. I’m 2.5 years into my transplant and I had a rejection episode about a year ago. We noticed an increase in my creatinine levels over several labs. Outside of that, I did not experience any other symptoms. I felt some pressure in area where my transplanted kidney, which could have resulted from the kidney swelling. But not 100% sure. I had to have two IVIG infusions, but helped with the rejection episode and I’ve been ok since. Let me know if you have any other questions and good luck!
Peter
What was your creatinine level since the rejection?
Turns out the original disease is back in the transplant. Doc's want to treat with rituximab. Creatinine is not severe at this time at 1.40, GFR 44, protein and blood in urine. Creatinine was a 1 or less until now.
I'm 8 yrs post transplant, Had 3 rejections first 1/12 yrs. I never knew without my bloodwork. then 2 yrs ago my BK virus came back & my creatnine level jumped from 1.5 to 2.5. I had no symptons then either. Monthly bloodwork showed the rejection with a biopsy. They reduced my Meds & BK was gone after a couple months. GOOD LUCK!!
Hi,
On 8/30 I will be celebrating 24 years since kidney transplant. I had two rejection episodes in 2004. I just remember having a really bad headache that just wouldn't go away. My parents took me to the dr and sure enough, I was having episode of rejection. The drs kept me in the hospital and did a biopsy of my kidney, in where they confirmed that cyclosporine was damaging my kidney. They switched me to Tac since then.
How are you doing? Is your creatinine stabilized? I hope it was just a scare!
Unfortunately, no. My original disease has returned and affected the transplanted organ. Thanks for checking in.
I am so sorry to hear that. Do they have a treatment plan in place?
Thank you. The current course is Rituxumab (?) but my family and I are weighing options. This drug has risks that are beyond belief. A lot of discussion to be had.
Thank you. The current course is Rituxumab (?) but my family and I are weighing options. This drug has risks that are beyond belief. A lot of discussion to be had.
I understand the concerns. Did they explain why it is the best option? The goal is to stop the overactive autoimmunity that is attacking your transplant. They probably feel the anti-rejection meds you are taking isn't sufficient. I have never had Rituxumab myself but I know people who had, and he did very well on it. I hope the new treatment, whatever you decide to go with, works effectively to stop the cellular rejection quickly! Stay positive.
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