Remicade and acute kidney failure?

Hey guys,
I had a modified APR Colostomy surgery April 15th (due to rectovagina fistula leakage originating from rectum/Hartmanns pouch going into my urethea causing UTIs), lab work May 18th right before infusion showed egfr of 60, (egfr has been slowly working its way down the longer I am on Remicade--but GI said it was ok cause everything else was pretty normal..I brought this to his attention many times because it really bothered me.) May 27th went in for a pap and she drew labs...egfr dropped to 45 and they said I was in acute renal failure. Saw nephrologist June 2nd...egfr had gone up to 61.

We cancelled the next Remicade infusion, I have altered my diet and the nephrologist is obtaining all records from the GI and hospital. Her initial thoughts were Remicade and MX are causing the egfr to go down and advancing deterioration. However....if Remicade is really needed we could try it with a bag of saline just prior and after the infusion. She is also very concerned about me even trying any other meds because of this.

I am scared to do any more infusions. I can't save whats left of my colon at the expense of my kidneys. Sidenote...Moms egfr was in her 90s when she was 85...3 sisters (85, 77, 69 yr old) all with current egfrs in 80s to 90s range.

Anyone have any thoughts or experience with this?

Clo

Post Edited (clo2014) : 6/9/2021 5:18:36 PM (GMT-6)

Thanks for your response Straydog.

I am on Vitamin D 5000 iu daily, 1000 mg Turmeric, 1250 mg vitamin B12, 1 mg folic acid, and a good probiotic.

I spoke to my GI yesterday. (9 days after I left him a message regarding the acute renal failure...hmmmm) He asked for a timeline and explanation of what happened and said that he will get with the nephrologist. He really does not want me to miss my next Remicade infusion. I advised him I was following her directive and about her idea of the bag of saline before and after a remicade infusion...but she was going to research further. He said he has not had another patient develop acute renal failure while on Remicade. My response was that it may have a lower percentage rate of occurances but if you are that occurance it changes things for you. So....he is researching further.....

The nephrologist told me not to get weekly labs. I only need them if I am in pain and right before her appointment in a month. She wants to give my kidneys time to stabilize and fears that if my numbers are not good the worry and stress will cause additional issues. I think the tests would help me know if I am drinking enough water, have lowered my protein intake enough, etc... 😱

I will let you all know how it goes...

Clo

Post Edited (clo2014) : 6/12/2021 9:02:31 PM (GMT-6)

I'm sorry you're going through this. It sounds scary and I hope they can figure things out.