1. < Neuropathy

Neuropathy + Proton-pump Inhibitor use?? Anyone had this experience?

Posted by piross1528 @piross1528, Sep 11, 2021

Hello there,

I am experiencing symptoms of SFN and am wondering if anyone has ever made this connection, had this experience, or heard of such a thing. I am looking for the cause of my neuropathy and the only med I currently take is Prilosec and have been daily for about 2 years. However, my serum B12 levels are high. I have recently discontinued the PPI and am really hoping the symptoms resolve as this has a been a difficult time for me emotionally and physically. Has anyone here ever had a neuropathy they believed to be linked to PPI use? Thank you! Steve P

Interested in more discussions like this? Go to the Neuropathy Support Group.

bobcardi63 | @bobcardi63 | Oct 24, 2023
In reply to @johnbishop "Welcome @bobcardi63, I only have the numbness and some tingling with my neuropathy but others may..." + (show)
@johnbishop

Welcome @bobcardi63, I only have the numbness and some tingling with my neuropathy but others may have experience with the burning pain they can share with you. @katec started the following discussion that you might find helpful.
--- Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/.

Is most of the burning pain in the upper part of your body?

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Thanks, I will look at that discussion. The most painful areas for awhile have been on my upper body (triceps, ribs, stomach, lower back...). But I still have bad spots on my quads which are painful. I feel it on my face once in awhile as well as other parts. The second neurologist I saw had a biopsy ordered and there was significant nerve damage on my lower leg - but not much pain on lower legs.

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brennankb55 | @brennankb55 | Apr 8 1:44am
In reply to @bobcardi63 "Hello, I too have been diagnosed with SFN. I have been on Omeprazole for years. My..." + (show)
@bobcardi63

Hello, I too have been diagnosed with SFN. I have been on Omeprazole for years. My SFN started about a year and a half ago. I have a burning sensation on a majority of my body (upper and lower) with varying degrees of intensity which varies daily. The drugs I've been prescribed (pregabalin, gabapentin... ) have done nothing to ease the pain. The only thing that works somewhat is Advil. Anyone else with this type of situation? Any info would be greatly appreciated.

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I have idiopathic PN in both feet that has worsened over the past 5 years. It started close to 10 years ago in my left foot, diagnosed only as "metatarsalgia." I have burning, tingling, hot/cold sensation, numbness, and stabbing nerve pain in my toes and the balls of my feet. When we moved to NV in 2021, a neurologist had me try 300mg Gabapentin. I quickly decided I didn't want to stay on it because of the high dose required to relieve pain. So my PCP put me on Pregabalin (Lyrica) at 75mg 3 times a day, and that has helped relieve about 50-60% of my symptoms. Thinking back to when the metatarsalgia in my left foot was getting worse is about the same time my former PCP put me on Imeprazole for GERD. That was probably around 2012, maybe sooner. I've been taking it ever since and never thought about whether there might be a connection between it and my neuropathy! My current PCP who prescribed the Lyrica has never said anything about the long-term use of Imeprazole, so I'm going to mention it to him! Meanwhile, I saw an earlier post about tapering off the PPI and will be following that to the letter! If anyone following this thread happens to see my post, let me know if you've experienced any relief after eliminating the PPI or how doing so has affected your neuropathy pain. I'm hoping soneone has found some relief. I will post my results after tapering off the Imeprazole and giving it some time to see if there is any noticeable difference. I empathize with all who suffer from this miserable condition.

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2 replies
domiha | @domiha | Apr 9 5:15pm
In reply to @brennankb55 "I have idiopathic PN in both feet that has worsened over the past 5 years. It..." + (show)
@brennankb55

I have idiopathic PN in both feet that has worsened over the past 5 years. It started close to 10 years ago in my left foot, diagnosed only as "metatarsalgia." I have burning, tingling, hot/cold sensation, numbness, and stabbing nerve pain in my toes and the balls of my feet. When we moved to NV in 2021, a neurologist had me try 300mg Gabapentin. I quickly decided I didn't want to stay on it because of the high dose required to relieve pain. So my PCP put me on Pregabalin (Lyrica) at 75mg 3 times a day, and that has helped relieve about 50-60% of my symptoms. Thinking back to when the metatarsalgia in my left foot was getting worse is about the same time my former PCP put me on Imeprazole for GERD. That was probably around 2012, maybe sooner. I've been taking it ever since and never thought about whether there might be a connection between it and my neuropathy! My current PCP who prescribed the Lyrica has never said anything about the long-term use of Imeprazole, so I'm going to mention it to him! Meanwhile, I saw an earlier post about tapering off the PPI and will be following that to the letter! If anyone following this thread happens to see my post, let me know if you've experienced any relief after eliminating the PPI or how doing so has affected your neuropathy pain. I'm hoping soneone has found some relief. I will post my results after tapering off the Imeprazole and giving it some time to see if there is any noticeable difference. I empathize with all who suffer from this miserable condition.

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I was on PPIs for years for GERD. At my last colonoscopy/endoscopy 4 years ago, the doctor found my stomach was filled with lots of small benign polyps. These are CAUSED by the PPI in SOME people. So I was taken off the PPI and I now take Pepcid (generic) and it works great. NO relation to my PN that began afterwards.... but just another note to share with anyone taking PPIs for GERD.

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1 reply
rmshackelton | @rmshackelton | Apr 11 12:50pm
In reply to @brennankb55 "I have idiopathic PN in both feet that has worsened over the past 5 years. It..." + (show)
@brennankb55

I have idiopathic PN in both feet that has worsened over the past 5 years. It started close to 10 years ago in my left foot, diagnosed only as "metatarsalgia." I have burning, tingling, hot/cold sensation, numbness, and stabbing nerve pain in my toes and the balls of my feet. When we moved to NV in 2021, a neurologist had me try 300mg Gabapentin. I quickly decided I didn't want to stay on it because of the high dose required to relieve pain. So my PCP put me on Pregabalin (Lyrica) at 75mg 3 times a day, and that has helped relieve about 50-60% of my symptoms. Thinking back to when the metatarsalgia in my left foot was getting worse is about the same time my former PCP put me on Imeprazole for GERD. That was probably around 2012, maybe sooner. I've been taking it ever since and never thought about whether there might be a connection between it and my neuropathy! My current PCP who prescribed the Lyrica has never said anything about the long-term use of Imeprazole, so I'm going to mention it to him! Meanwhile, I saw an earlier post about tapering off the PPI and will be following that to the letter! If anyone following this thread happens to see my post, let me know if you've experienced any relief after eliminating the PPI or how doing so has affected your neuropathy pain. I'm hoping soneone has found some relief. I will post my results after tapering off the Imeprazole and giving it some time to see if there is any noticeable difference. I empathize with all who suffer from this miserable condition.

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I had to get off Lyrica because of my heart. My cardio doctor did not want me to be on it so only used it for a few months but it made no difference in my pain levels when I came off it. Best thing I have been prescribed and does not effect my liver is THC gummies. I still take a Fentanyl patch, 50mcg. but all other opiates are GONE!!!!!

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davidwrenn | @davidwrenn | Apr 12 12:36pm

Chronic use of PPIs ( prilosec et al) or H2RAs (Pepcid et al) or metformin all are associated with the decreased adsorption of vitamin B12 by the gut. Chronic B12 deficiency is associated with disturbances in folate metabolism and axonal structual intergrity and fuctioning which contribute to the development or worsening of peripheral neuropathy. If you are concerned about the deleterious effects of these acid suppressants you could always resort to the old tried and true remedies we used to use to treat heartburn (GERD), calcium carbonate, sodium bicarbonate with or without alginates (Gaviscon) to get reasonable symptom relief.

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brennankb55 | @brennankb55 | Apr 12 3:29pm
In reply to @domiha "I was on PPIs for years for GERD. At my last colonoscopy/endoscopy 4 years ago, the..." + (show)
@domiha

I was on PPIs for years for GERD. At my last colonoscopy/endoscopy 4 years ago, the doctor found my stomach was filled with lots of small benign polyps. These are CAUSED by the PPI in SOME people. So I was taken off the PPI and I now take Pepcid (generic) and it works great. NO relation to my PN that began afterwards.... but just another note to share with anyone taking PPIs for GERD.

Jump to this post

Wow! I wonder how many people don't know about this! I've never had either of those procedures, but I'm sure at some point I probably will. I've started tapering off the PPI (Imeprazole) that I've taken foreger. Years ago my PCP had me switch from Imeprazole to Pepcid, and it didn't work for me. I'm wondering if after I get off of the PPI I'll be able to use Pepcid with success. Fingers crossed!

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1 reply
crossette | @crossette | Apr 15 11:06am

Here is my experience with GERD and how I cured it. I somehow came down with a case of cellulitis in my right leg. This is a mid-layer skin infection of bacteria commonly found on our skin like strep bacteria. I did have a small cut on my lower leg and that is how it got in. The doctor prescribed antibiotics for 2 weeks and that cured it. But it left me with a case of heartburn because the antibiotics had killed much of the good bacteria in my gut. I had never had heartburn before. I searched Internet forums for people who had the same situation and found many. I know how bad Prilosec can be for you, especially long term so I did not want that stuff. So I restored my good bacteria by drinking half a cup a day of Kefir which is a fermented milk product that you can find in the yogurt section of most supermarkets. I like the taste of the plain, it is tangy. And you can add any flavoring to it you like such as a little Hershey's chocolate syrup. Within a week my heartburn was gone and after drinking 3 bottles of Kefir over several weeks I just stopped using it and heartburn did not return! Yogurt does not work because it only has 2 or 3 types of bacteria and most kefir has 10 or 12 types!
Details on kefir here: https://en.wikipedia.org/wiki/Kefir

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1 reply
brennankb55 | @brennankb55 | 5 days ago
In reply to @crossette "Here is my experience with GERD and how I cured it. I somehow came down with..." + (show)
@crossette

Here is my experience with GERD and how I cured it. I somehow came down with a case of cellulitis in my right leg. This is a mid-layer skin infection of bacteria commonly found on our skin like strep bacteria. I did have a small cut on my lower leg and that is how it got in. The doctor prescribed antibiotics for 2 weeks and that cured it. But it left me with a case of heartburn because the antibiotics had killed much of the good bacteria in my gut. I had never had heartburn before. I searched Internet forums for people who had the same situation and found many. I know how bad Prilosec can be for you, especially long term so I did not want that stuff. So I restored my good bacteria by drinking half a cup a day of Kefir which is a fermented milk product that you can find in the yogurt section of most supermarkets. I like the taste of the plain, it is tangy. And you can add any flavoring to it you like such as a little Hershey's chocolate syrup. Within a week my heartburn was gone and after drinking 3 bottles of Kefir over several weeks I just stopped using it and heartburn did not return! Yogurt does not work because it only has 2 or 3 types of bacteria and most kefir has 10 or 12 types!
Details on kefir here: https://en.wikipedia.org/wiki/Kefir

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Uggh - I've tried Kefir because my sis-in-law drinks the stuff by the gallons. I couldn't stand it - it was more of a texture thing because I love the tang of yogurt and sour cream. I tried a flavored kind (think it was blueberry) but I didn't think about buying it plain and flavoring it myself. If I get up the nerve, I might give it another try. {{cringe}} LOL!
Update on tapering off Imeprezole: I just started the second "two week" period where I'm taking a pill every other day. The first two weeks were fine, so I'll see how this goes. I'm looking forward to getting off of it entirely, and trying more natural methods of dealing with GERD. I wonder how vanilla ice cream works? 😉

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1 reply
crossette | @crossette | 5 days ago
In reply to @brennankb55 "Uggh - I've tried Kefir because my sis-in-law drinks the stuff by the gallons. I couldn't..." + (show)
@brennankb55

Uggh - I've tried Kefir because my sis-in-law drinks the stuff by the gallons. I couldn't stand it - it was more of a texture thing because I love the tang of yogurt and sour cream. I tried a flavored kind (think it was blueberry) but I didn't think about buying it plain and flavoring it myself. If I get up the nerve, I might give it another try. {{cringe}} LOL!
Update on tapering off Imeprezole: I just started the second "two week" period where I'm taking a pill every other day. The first two weeks were fine, so I'll see how this goes. I'm looking forward to getting off of it entirely, and trying more natural methods of dealing with GERD. I wonder how vanilla ice cream works? 😉

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You can mix kefir with almost anything and it still has the 12 good bacteria in it. I like Hershey's Special Dark chocolate. Think of it as a nice thick milk shake! Or since you like vanilla ice cream add lots of vanilla or just plain vanilla ice cream. Imeprezole causes dementia if you take it for years.

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1 reply
brennankb55 | @brennankb55 | 5 days ago
In reply to @crossette "You can mix kefir with almost anything and it still has the 12 good bacteria in..." + (show)
@crossette

You can mix kefir with almost anything and it still has the 12 good bacteria in it. I like Hershey's Special Dark chocolate. Think of it as a nice thick milk shake! Or since you like vanilla ice cream add lots of vanilla or just plain vanilla ice cream. Imeprezole causes dementia if you take it for years.

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Great idea to use the Hershey's Special Dark, which I love! Oh, I love ice cream of all flavors! I've taken Imeprezole for probably close to 15 years and I'm 69. That might explain some of the more frequent "senior moments" I've been having! I will definitely try your suggestions with making Kefir more palatable and tasty. Thank you!

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