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Remicade and acute kidney failure?

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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 6/9/2021 11:47 AM (GMT -6)
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)

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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18923
Posted 6/10/2021 10:28 AM (GMT -6)
Clo, I read that the odds with Remicade are 0.1 to 1.0 odds of it affecting the kidneys & same with mtx, both considered rare. Are you on any other medications or supplements by chance? Please let us know what your dr decides to do. Sorry that I am of no help.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 6/12/2021 8:58 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)

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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1374
Posted 6/13/2021 8:11 AM (GMT -6)
darn! So sorry! What a mess this disease can cause!

Have you tried entyvio? I haven't had any issues on it and since its more gut specific it might be a more viable option.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7135
Posted 6/13/2021 9:27 AM (GMT -6)
I'm sorry you're going through this. It sounds scary and I hope they can figure things out.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 6/18/2021 8:45 PM (GMT -6)
Thank you all for your replies.

The saga continues....

Nephrologist is on vacation until the June 22. GI left a message that he has reached out to a top nephrologist specialist (I have never seen him and I don't know his name yet) and they think I should go into my 6 week Remicade infusion. If things go south there is a urinalysis protein test to rule out protein loss and if it is low and the protein is positive they can run a protein/creatinine ratio and a microabumin/creatinine ratio test.

I am wondering if I should have the tests done where I am now by a PCP, and forward all the tests to my nephrologist and GI and then call her upon her return. Then if everything is ok I could do the infusion at about the 8 week mark.

I am torn. I appreciate my GI for looking into tests needed to make sure I am ok...but I am not comfortable going into a Remicade infusion because a nephrologist that I have never seen says its ok... Does this make sense to anyone?

Maybe I am just too paranoid.

Clo
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 7/8/2021 9:18 PM (GMT -6)
Posting so if anyone else has these issues it may help.

In the last 8 weeks I have cut out sugar, soda, salt, and lowered the amount of protein. I have increased the amount of water that I drink daily to at least 96 ounces plus whatever other liquids I take in. (I slosh when I walk...lol)

Today I returned to my nephrologist. My blood tests are improving and almost normal. (egfr is up to 69! Yea!!) Since I have an aggressive fistulizing type of Crohns with UC thrown in I have to try the Remicade/methotrexate again. We are adding a large bag of saline prior to the beginning of the Remicade infusion. The Remicade amount will be 7.5. I will take 4 (2.5 mg) methotrexate tablets the Friday before the infusion (which takes place on Tuesday) and the Friday after. We will do a CBC, CMP and a CRP just prior to every infusion and repeat them at 2 weeks and 3 weeks post infusion. We will do this for the next 3 infusions. And finally...she wants to try to space the infusions at 8 weeks, then at 10 and finally at 12 weeks. We would then continue with the 12 week schedule testing bloodwork and urine....and adding in Prometheous testing to see what my Remicade and antibody level is. This is what she would like to see happen--but the GI is currently out of the country.....so the timeframes between infusions may change once he returns. (Except for the Remicade happening next week....that's a done deal)

She is adamant that the toxicity of Remicade and Methotrexate after my operation and the anesthesia caused the acute renal failure. She indicated that approximately 1% of individuals taking Remicade have kidney issues. She stated that with some individuals it can take up to 12 months for their kidneys to recover after surgery/anesthesia....add in the renal failure for me...and she thinks it will be at least 24 months of monitoring and watching everything I eat, drink and do. She also believes that since my egfr was at 60 prior to my infusions for the last year....that I was in Chronic kidney failure with acute renal failure occurring 2 to 3 weeks after each infusion with my kidneys somewhat recovering to an egfr of 60 just prior the infusions at every 6 weeks. She believes that the renal lesions on the CT scan indicate damage from the Acute Renal failure. She does not know if I will recover any more than where I am currently at. Her goal is to prevent any further damage. I will have a sonogram next month and a CT scan at the end of the year. (I had CT in Dec 2020 and April 2021)

Remicade scheduled for next Tuesday. I will let you know how it goes. Cross your fingers and say a prayer!

Clo

Post Edited (clo2014) : 7/8/2021 9:36:41 PM (GMT-6)

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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1374
Posted 7/9/2021 8:20 AM (GMT -6)
Fingers crossed for you! Hoping all goes well. Is there a reason they have decided against a different drug than remicade? (Sorry if you’ve explained before — I didn’t read the older posts today)
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 7/10/2021 7:03 PM (GMT -6)
Thanks Flowersgal...

Once I developed Crohns/UC I started to have allergic reactions to antibiotics and the lower end scale of Crohns medications. I don't mean...Oh I broke out in hives. I would stop breathing or my blood pressure would plummet necessitating immediate hospitalization. Once we landed on Remicade and methotrexate with out serious allergic reactions we decided not to chance anything else unless we absolutely had to.

We were hoping those reactions and the propensity to have them might have calmed down...until we tried Bactrim for my UTI last December. It was a nightmare. I can take Cipro for 7 days (with benadryl every 6 hours-which totally puts me to sleep) but its better than nothing.

My nephrologist called me today to let me know I am going in for a sonogram late Wednesday afternoon after my infusion. She wants to compare with Oct 2020 and April 2021 CT scans. She is making sure that new lesions do not appear after the infusion. She is trying to hold off on another CT or MRI until December or until I really need it. Hmmmm...

I am also doing a 24 hour urine collection before and after the Remicade infusion....plus the blood work. All these tests make me nervous. If you test enough eventually you will find something. I am feeling like a lab rat......

Clo
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 8/9/2021 6:35 PM (GMT -6)
It's official. It's the Remicade impacting my kidneys.

I have had blood work done several times. I have been guzzling water like crazy. 4 thirty ounce glasses a day plus whatever other liquids I take in. I had a 24 hour collection on Monday...right before my Tuesday infusion...and collected 3500 ml and the average is 1600...lol... But the nephrologist recommended I drink that much to get me super hydrated before my infusion. (and everything came back normal and great on that test)

On 07.13.21 I had labs before my Remicade infusion. Egfr was up to 73. All my blood work was gloriously normal. We ran a constant saline drip while having the infusion. Had infusion. Knees immediately felt so swollen they did not want to bend...headache....then my lower back hurt alittle...two weeks later my sides were still achy...(enough to keep me from sleeping)
Two weeks 3 days after infusion Labwork showed my Egfr was 52.

I have an appointment with the colorectal surgeon and nephrologist this week. Will have to see what they think and then speak to my GI. More labs will be done next week. In the meantime..still guzzling water....no protein in urine.

Everything I have researched indicates the other meds we use can also impact our kidneys. My nephrologist is really concerned. If I go off Remicade I risk a flare...but I don't want to take out my kidneys....and I am hesitant to immediately start new medications with my kidneys reacting like this ....

And here's a question....if I just spread the Remicade Infusions out further apart...like every 10 or 12 weeks...maybe that would give my kidneys enough time to heal from the surgery I had April 15th and to be able to tolerate infusions?? I am so confused....

Thoughts anyone?

Clo

Post Edited (clo2014) : 8/9/2021 6:39:30 PM (GMT-6)

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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18923
Posted 8/10/2021 8:26 AM (GMT -6)
Clo, I found an old 2008 post in the crohns forum by Ides that is a mod. She said Remicade has a half life of 21 days & is out of the system at day 42. Do not take this as absolutely being correct. I would contact my dr & ask how long it stays in the system. I am so sorry that you are having such terrible issues with this.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7135
Posted 8/10/2021 8:54 AM (GMT -6)
I don't have any insight or advice, but just wanted to say sorry you are dealing with this.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2149
Posted 8/10/2021 5:03 PM (GMT -6)
Are you doing 7.5 mg/kg every 8 weeks right now? Can you lower the dose to 5 mg and go to 10 weeks? Why did your knees well like that? Sounds like it was some sort of infusion reaction. Can you have your docs talk to each other so each of them know the risks you are facing and maybe they can work together to come up with a plan for you?

So sorry you are going through this.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 8/12/2021 9:24 PM (GMT -6)
Thanks all for your responses.

I had a virtual meeting with my CRS. He sorta knew what was going on. He has not been kept in the loop as I was trying to work with my PCP, GI, Nephrologist and Infectious Disease/Infusion specialist. (It's been like herding cats!)

I advised my CRS that nephrologist really thinks my body may need a break from Remicade and methotrexate. He advised me that he would agree to not taking methotrexate but that I absolutely had to be an an anti tnf from now on. He has had me in 3 surgeries and, after pulling a code on one and renal failure in the other 2, he is very doubtful if I could survive another surgery. He stated that people with multiple extra intestinal symptoms do not fair well if they go off an anti tnf. He was so concerned he called the nephrologist after our meeting.

The nephrologist is now saying that although my Egfr is dropping after every infusion my body is recovering up to an acceptable level of Egfr of 73 with other aspects of my labs just alittle off. Since the CRS shared his information she wants me to continue with Remicade. She would like to see the infusions of 7.5 every six weeks to be changed to 8 weeks and if I stay stable to drop the Remicade amount...and if I still stay stable to try infusions at 9 then 10 weeks. No methotrexate. She would continue to order labs 2 weeks after my infusion and one right before the infusion starts. (I would like it to be done a few days before so if my egfr is too low I would know and not have the infusion...but I have to battle that one out later.) But she then stated I would have to address this with my GI and see what he thinks.

My GI....he used to be fantastic. Now getting a response from him is challenging. I am unsure if it is him, his physician assistant or his other employees.....or maybe it is the Covid surge. I just know that things have changed and I am so frustrated. With no antibodies from the vaccine, kidney issues and Covid running rampant....I am hesitant to go into his office, he only does virtual appointments one day a month, his PA does not like me (feelings mutual) and I do not trust her for timely responses. It took him 9 days to get back to me when I sent a message thru our patient portal (it was opened first thing the next morning) that I was in acute renal failure after my infusion. I asked him for a name of a nephrologist he was willing to work with. No response in the patient portal. He called waaaaay late...over a week later. He said he had just received the information. Hmmm. So either he didn't get it or he sat on it...so who do you trust? I am not willing to shop for another doctor at this time. Plus he's supposed to be one of the best. And so.....I am stuck once again waiting for yet another response from his office. I am trying to get my next infusion moved out 2 more weeks to 8 weeks. What a mess!!

So currently I am stuck between a rock and a hard place.

I also called my rheumatologist. She stated that sometimes Remicade will cause joint pain. She wonders if-although I am bone on bone in both knees because of Prednisone-its not making my pain slightly worse. I just know my knees have almost always hurt worse after my infusion but this last time or two it's been really challenging. So she just prescribed some pain cream for now. If we move the infusions further out I might get a clearer picture on if my knees improve right before Remicade....

Tonight...I loathe Crohn's disease and the way it has ravaged my body. It's like I am 85 instead of 60. I used to read the forum and think...oh Thank God that's not me.....and now I am that person having all those difficulties. I am so sad. It seems like the medical field looks for things to relieve our symptoms and not a cure. In the meantime I am getting my bottom kicked on a daily basis.

So folks...I would appreciate it if you would say a prayer, cross your fingers and send all the positive energy you can spare. To any newbies reading this...My case is one of those exceptionally rare cases that you should not base your decisions on...your journey will probably be much easier and better than mine has been.

Clo

P.S. The CRS, PCP, Infusion docs all talking to one another. The GI has been out of pocket when my nephrologist called him...and she has missed 2 of his calls. I just have to keep them trying... But really...Should the patient be the one driving their physicians contact attempts?

Post Edited (clo2014) : 8/12/2021 9:30:23 PM (GMT-6)

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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1374
Posted 8/13/2021 8:23 AM (GMT -6)
Clo! I am so sorry! Although not to the extent of your situation, I have been stuck in that place between doctors and insurance and no one getting through or moving and yet they are not the one suffering.

Sounds like your whole team is willing to work together — which is great! — except your GI — which sucks! Maybe the other drs can get him to reply to them.

I had an issue last month on my infusion order and waiting for dr response so it could get resolved in time (it didn’t!) so I know how frustrating that is.

Wishing you the best! 🤞🤞🤞
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1470
Posted 8/15/2021 8:46 PM (GMT -6)
Good News!!!! My GI has responded. He does not have any problem with moving my infusions to every 8 weeks. Yes!!!!

Bad news.....my infectious disease doctor-who is doing a trial for immunocompromised individuals and Pfizer 3rd shots...sent me an email stating that I am on the list for a vaccine thru his office but they don't have any ..lol...

Tomorrow I try the pharmacies around me....

Clo
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