Anyone take a PPI & your Kidney function declined? Worried!

Posted by sallylynn @sallylynn, Jun 3 9:51am

Hi. I have a question. I will try to abridge this.
12/2/2023. Was prescribed Pantoprazole by PCP foe erosive esophagitis/GERD. I was EXTREMELY hesitant to take it since I did a deep dive of research on PPI's
I ended up NOT taking at first & just took OTC Pepcid A.C.
I was not getting relief so I started taking 1 Pantoprazole 20mg a day.
Ar times I would take 1 Pantoprazole A.M. 1 Famotidine 20mg P.M.
For months (5) I would go days, or a week not taking any medication. On and off basically.
Less than 10 times in several months, I took smallest amount of Gaviscon at bedtime.
My ENT doctor prescribed Sucralfate suspension
This medication is to coat stomache lining & esophagus fro "healing".
I stopped taking it after day 20. This drug has aluminum in it and Silica.
*COMPARISON OF BASIC METABOLIC PANELS:
12/26/2023- CREATININE 1.08/ eGFR 61.
05/22/2024- CREATININE 1.23/ eGFR 49.
* A doctor wrote a message on my 05/22/20224 BMP results stating my results ore OK, your creatinine is a bit higher, everything else is good.No mention on my eGFR. Told me to drink some more water to help my creatinine.
* On 05/07/2024 I wrote a My Chart message to my PCP that starting on 05/05/2024 my feet and hands are tingling & through the night. My feet are aching & tingling but my hands get tingle zaps.Let's call it neuropathy. It comes & goes. Not constant. Now, why I am concerned is the Kidney foundation on the Web does say kidney problems can cause hands and feet to "Tingle". I reached out to my Clinic, spoke to a nurse with my concerns, and the jest of it is, I might as well have been speaking to a painting on a wall. I feel justified to be worried hence the drop in my eGFR and rise in my creatinine but the doctors are not? I am terrified by me taking pantoprazole has permanently damaged my kidneys, and yes, it does. If a PPI causes CKD, it is permanent. AKI from PPI's IS reversible. Anyone out there with a similar situation? I see my "New" PCP on 06/10/2024 and another BMP lab on 06/17/2024. Any other lab suggestions? Thank you and God bless.

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@sallylynn I cannot write on your other issues of Gerd and other conditions relating between you and your ENT doc, but can let you know something about creatinine eGFR. This eGFR relates to kidney function and the changes of muscle mass in your body. If you have a score of 60 or higher, you are deemed to have normal kidney function. As you have experienced, the creatinine eGFR can change over short or long periods due to inflammation. hydration, diet, exercise, and a host of other factors. Within the nephrology community, a more relevant test called Cystation C is used as this is related to the cells in your body and based on your current age. The Cystatin C eGFR lab test is considered more reliable for kidney function than the creatinine eGFR. Fluctuation of values can occur more often with the creatinine eGFR than Cystatin C eGFR.

In your remarks, in addition to your PCP, you may wish starting to work with a nephrologist, pharmacist, and dietitian for better care. Yes, chronic kidney disease does have neuropathy, tingly, and itching and can be somewhat minimized. Specialists like nephrologists can make a difference rather than relying on a "new PCP."

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@collegeprof

@sallylynn I cannot write on your other issues of Gerd and other conditions relating between you and your ENT doc, but can let you know something about creatinine eGFR. This eGFR relates to kidney function and the changes of muscle mass in your body. If you have a score of 60 or higher, you are deemed to have normal kidney function. As you have experienced, the creatinine eGFR can change over short or long periods due to inflammation. hydration, diet, exercise, and a host of other factors. Within the nephrology community, a more relevant test called Cystation C is used as this is related to the cells in your body and based on your current age. The Cystatin C eGFR lab test is considered more reliable for kidney function than the creatinine eGFR. Fluctuation of values can occur more often with the creatinine eGFR than Cystatin C eGFR.

In your remarks, in addition to your PCP, you may wish starting to work with a nephrologist, pharmacist, and dietitian for better care. Yes, chronic kidney disease does have neuropathy, tingly, and itching and can be somewhat minimized. Specialists like nephrologists can make a difference rather than relying on a "new PCP."

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I wish to thank you for reaching out. ~ As you saw. on the 12/26/2024 my Basic Metabolic Panel lab my eGFR was 61 & my Creatinine was slightly elevated at 1.08. *Please take note what I have been dealing with with my PCP's and how they operate & [inept] they are. I am STUCK with the Clinics & Hospital system I am networked in due to insurance reasons. For over 2+ months I was BEGGING my PCP for a BMP because I was taking PPI's, a H2 blocker & recently was RX'd Sucralfate suspension by my gastrologist. She, my former PCP refused over and over to put the lab order in. Her reason? I quit smoking(I quit in December 2023). IF she would have simply put the order in for the for a BMP several months ago, as I begged her to do, I would have STOPPED THEN taking Pantoprazole and Famotidine. I am sure from December to May I would have seen the decline. I was CONTINUALLY being gaslighted by her. Believe me, I tried with all my might to go to different clinic (Called the Welcome Center) to find a different doctor, same story: Not taking new patients. IF one was, a year and 1/2 booked out. My new Doctor I see on 06/10. I made aware in a My Chart message of my tingling in hands and feet & want to discuss this in my appt. I absolutely want a Cystation C lab, however, I will have to get on my hands and knees and beg for it like I did for my BMP lab. *It took my gastrologist to my former PCP to put in lab order for a BMP & she still didn't! A different Doctor did! (My former PCP has left the clinic as she was a Resident). **I just can't make an appt. with a nephrologist, that needs a REFERRAL.~ *True story: I asked my former PCP, for a referral to ENT. She would NOT do it. I suffer from earaches and Burning Mouth Syndrome for months! She was 100% aware of this since my appts. with her. In one appt. she said to my face" I will be blunt with you, ENT is really busy and they don't have time for you". I am seeing you for these problems". I then had my second esophagram (Barium swallow). The DOCTOR asked me WHY I haven't been to ENT and I told her exactly what my PCP said and she stated she was going to "send her a email". The NEXT day ENT called me to schedule a appt! This was the nightmare I deal with with my health problems! So you see, I have to fight tooth and nail to get blood work and referrals. This is real, and many patients go through this nightmare within the Medical arena.
I am my ONLY advocate and I have to constantly push them to hear me.:( I am sad & depressed I have health issues because I then am forced to have to deal with medical personnel.~ Bottom line, I am worried,I agree with you I should see a nephrologist, let's see if I have to beg for a referral ~

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@sallylynn Your story sounds very sad for tring to have a developed standard of care. In the meantime, can you check with any pharmacists near you to see if there are side effects with the medication (s) you are taking? Drugs.com may have some info as well.

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@collegeprof

@sallylynn Your story sounds very sad for tring to have a developed standard of care. In the meantime, can you check with any pharmacists near you to see if there are side effects with the medication (s) you are taking? Drugs.com may have some info as well.

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Thank you very much for your kind comment, that means much. ~ It's been a rough road in the arena with my medical care. I am very angry at myself for ever submitting to taking Pantoprazole with me knowing how dangerous PPI's are. This is from Google: Latest Proton Pump Inhibitor Lawsuit Updates As of June 2024, 18,668 people in the U.S. have filed lawsuits against PPI manufacturers after developing renal problems. Of these cases, 12,769 are still active as the settlement process is underway.
Look how many People developed renal problems taking PPi's!!!!! This is just the USA!
I kept getting reassured PPI's are safe with short term use. I took Pantoprazole on and off for approx. 3-4 months. I took Famotidine20mg pretty regularly which is a H2 blocker antagonist. What angers me beyond words is the gas lighting from my former PCP who is no longer my doctor.For months I begged her to please order a BMP for me.She kept refusing. IF she would have put in the order for me at least 2 months ago, like I begged her to do, I could have found out sooner my creatinine was elevated & my GFR was substantially lower and I would have immediately stopped all those meds! I spoke with a nurse this morning and asked her to please tell mt new Doctor to order a Cystatin C blood test, I guess these are more accurate than a BMP. ~ I stopped all my medications after I saw my results. No more PPI's , H2 blockers or sucralfate. I pray my next blood work there will be improvement.

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@sallylynn Please talk to a pharmacist about any meds you think may be problematic for you. They are there to he helpful.

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@collegeprof

@sallylynn Please talk to a pharmacist about any meds you think may be problematic for you. They are there to he helpful.

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Good evening. I actually did call my Walgreens tonight and talked to the Pharmacist. I went through everything step by step( He was actually in my patient profile while we talked since I get my RX's there). He said it's possible the Pantoprazole is responsible but because I stopped talking all my medications he believes my numbers should improve within a few weeks.He said keep a close eye on my next labs which I will. He didn't think my creatinine of 1.23 was critically high and he has seen much worse eGFR's. He said all the drugs are out of my body now, clearance is 5 days. I also asked my PCP in My Chart to please order a Cystatin C blood test. She did put in a order for Magnesium. I will be seeing her on 06/10, so in 6 days. I also brought up I have asked my "former" PCP for the last 2 months+ to please place a lab for a BMP because I am on 3 drugs that are not good for the kidneys and she refused! Her reason? Because I quit smoking so there's no need too. IF I would have had my BMP checked 2 or 3 months ago like I wanted to I would have caught my creatinine rising and my eGFR declining!!!! I blame this on her totally!! My Gastro even sent a request for a BMP for me and she still didn't put in the order! Another Doctor actually had to place the lab order for my BMP! I think I am going to call the Director of the clinic and put in a formal complaint. Total narcissist/Gas lighter. ~ I want to rest my mind & not fret but boy do I want to beat myself up forever sallowing one stupid PPI or H2 blocker.

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@sallylynn

Good evening. I actually did call my Walgreens tonight and talked to the Pharmacist. I went through everything step by step( He was actually in my patient profile while we talked since I get my RX's there). He said it's possible the Pantoprazole is responsible but because I stopped talking all my medications he believes my numbers should improve within a few weeks.He said keep a close eye on my next labs which I will. He didn't think my creatinine of 1.23 was critically high and he has seen much worse eGFR's. He said all the drugs are out of my body now, clearance is 5 days. I also asked my PCP in My Chart to please order a Cystatin C blood test. She did put in a order for Magnesium. I will be seeing her on 06/10, so in 6 days. I also brought up I have asked my "former" PCP for the last 2 months+ to please place a lab for a BMP because I am on 3 drugs that are not good for the kidneys and she refused! Her reason? Because I quit smoking so there's no need too. IF I would have had my BMP checked 2 or 3 months ago like I wanted to I would have caught my creatinine rising and my eGFR declining!!!! I blame this on her totally!! My Gastro even sent a request for a BMP for me and she still didn't put in the order! Another Doctor actually had to place the lab order for my BMP! I think I am going to call the Director of the clinic and put in a formal complaint. Total narcissist/Gas lighter. ~ I want to rest my mind & not fret but boy do I want to beat myself up forever sallowing one stupid PPI or H2 blocker.

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The Pharmacist was very kind and very patient explaining things to me. Thank you for recommending that.

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@sallylynn you seem to have a lot going on: conditions, medications, tests and specialists. It must be difficult to keep this all sorted out! In most cases a good primary care physician (PCP) can handle these things. The specialists don’t become necessary until a particular condition needs specialized care. I’m sorry you have had trouble finding a satisfactory PCP.

You mentioned having a gastrologist. You must mean a gastroenterologist. This is the specialist for all things stomach and intestines. They are the ones to care for gastroesophageal reflux disease (GERD). They prescribe things like proton pump inhibitors (PPIs) and H2 blockers. Both of these reduce acid, but use different mechanisms. You’ve had experience with both and have mentioned various meds from both types.

You mentioned having an ENT. This is an otolaryngologist or to put it in simpler terms Ear, Nose and Throat doctor. That would be the specialist for your earaches. Not sure if thy could tend to your “Burning Mouth Syndrome” unless it is related to your nose or throat (Those parts of the anatomy are connected after all).

Last but not least your discussion focuses on a concern that past use of PPIs and perhaps H2 Blockers may have caused a decline in kidney function. Two kidney function tests have been discussed here. One is the more common estimated Glomerular Filtration Rate (eGFR) which includes a measure of serum creatinine. The other is a less common, less used Cystatin C test. The basic metabolic panel (BMP) should include the eGFR but not necessarily. My nephrologist orders a renal panel of blood tests and a urine collection that includes more tests. Whichever measurements are used, it is best to get a sense of the trend over time. A nephrologist is the specialist to order these tests and interpret them for you. I must say at this point that I have stage 4 Chronic Kidney Disease (CKD). I did not even have a nephrologist until I was already stage 3 CKD. This is an eGFR in the 30’s. Many general practitioner doctors don’t become concerned about kidney disease until the eGFR gets at least that bad.

As to whether your stomach medications have caused a decline in kidney function your best answer might come from the provider who prescribed them or recommended the over the counter (OTC) medications. If you have difficulty getting any answers there your pharmacist can be very helpful as @collegeprof suggested.

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@cehunt57

@sallylynn you seem to have a lot going on: conditions, medications, tests and specialists. It must be difficult to keep this all sorted out! In most cases a good primary care physician (PCP) can handle these things. The specialists don’t become necessary until a particular condition needs specialized care. I’m sorry you have had trouble finding a satisfactory PCP.

You mentioned having a gastrologist. You must mean a gastroenterologist. This is the specialist for all things stomach and intestines. They are the ones to care for gastroesophageal reflux disease (GERD). They prescribe things like proton pump inhibitors (PPIs) and H2 blockers. Both of these reduce acid, but use different mechanisms. You’ve had experience with both and have mentioned various meds from both types.

You mentioned having an ENT. This is an otolaryngologist or to put it in simpler terms Ear, Nose and Throat doctor. That would be the specialist for your earaches. Not sure if thy could tend to your “Burning Mouth Syndrome” unless it is related to your nose or throat (Those parts of the anatomy are connected after all).

Last but not least your discussion focuses on a concern that past use of PPIs and perhaps H2 Blockers may have caused a decline in kidney function. Two kidney function tests have been discussed here. One is the more common estimated Glomerular Filtration Rate (eGFR) which includes a measure of serum creatinine. The other is a less common, less used Cystatin C test. The basic metabolic panel (BMP) should include the eGFR but not necessarily. My nephrologist orders a renal panel of blood tests and a urine collection that includes more tests. Whichever measurements are used, it is best to get a sense of the trend over time. A nephrologist is the specialist to order these tests and interpret them for you. I must say at this point that I have stage 4 Chronic Kidney Disease (CKD). I did not even have a nephrologist until I was already stage 3 CKD. This is an eGFR in the 30’s. Many general practitioner doctors don’t become concerned about kidney disease until the eGFR gets at least that bad.

As to whether your stomach medications have caused a decline in kidney function your best answer might come from the provider who prescribed them or recommended the over the counter (OTC) medications. If you have difficulty getting any answers there your pharmacist can be very helpful as @collegeprof suggested.

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Thank you so much for your response. you are correct, I should have said gastroenterologist. I just call Ear, Nose Throat ENT. I did go to ENT for my Burning Mouth Syndrome. I was RX'd a gritty type past for relief & a solution. I didn't want to pay the copay for the solution ( a rinse) very expensive.My PCP RX'd the PPI which I didn't take at first. I have a endoscopy 12/27/2023. I have L.A. Grade B erosive esophagitis hence the PPI & H2 blocker. I preferred the H2 blocker over the PPI for what information I have read on the web. My gastroenterologist RX'd me esomeeprazole (PPI) and even stronger than pantoprazole but didn't blink a eye or concern of my kidney function. I picked it up and decided not to take it. It has horrible patient reviews, actually pantoprazole does too. At this point all I wish for is my creatinine to get back in the normal range & my eGFR. ~ I actually did call my Pharmacist at Walgreens. He was helpful & seemed somewhat optimistic...I guess. This is a fact: PPI's cause AKI and CKD. With the AKI the damage can be reversible.IF a PPI causes Kidney disease, it is not reversible, that is what I am afraid of. I am just really frustrated/ticked off at my former PCP I had during these last 5 months who refused to order a BMP lab for me!I asked her several times, expressing my concerns for my kidney health being on 2 medications that clearly have sounding alarms for renal failure!!!!!! I literally begged her! IF she would have put the lab in a couple months ago like I wanted her too, I would have STOPPED the PPI & H2 blocker then! I would have seen the decline.I blame her for her this! She was useless, inept and gaslit me constantly, and yes, I tried with all my might to get a different doctor but no one was taking new patients I even called the Welcome Center to assist me~If one was, they are booked out for a year and a 1/2. My new Doctor has many more years of experience(Not a Resident) had one patient review on the Web and was given a "1". Horrible horrible review. This is my world with doctors. I have learned the hard way how to stand up for myself and it really sucks patients have to be on the defense all the time to save their very life.

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@collegeprof

@sallylynn Please talk to a pharmacist about any meds you think may be problematic for you. They are there to he helpful.

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I agree, @collegeprof! A pharmacist who has your medication history can really be invaluable in answering questions and seeing possible drug interactions. They have no "dog in the fight" and want to help people, from my experience.
Ginger

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