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

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@brennankb55

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!

Jump to this post

I am retired biomedic scientist I worked on the clinical development and launch of Prilosec in the US market. Many people and physicians, other than gastroenterologists, are still not familiar with the side effects that may occur in patients with long term use of acid suppressants like PPIs (prilosec etc) and H2RAs (pepcid etc).
The chronic suppression of acid secretion can cause a number of adverse events. One that is particularly problematic besides chronic gastrtis and gastric nodule formation are changes in the normal bacterial strains that colonize the normal gut (normal microbiome). Prolonged use of acid suppressants may cause the overgrowth of various deleterious bacterial species such as C. Difficile and others pathogenic strains. This may lead to severe diarrheal disease or small intestinal bacterial overgrowth (SIBO). This causes abdominal bloating, cramps, chronic diarrhea, malabsorption of nutrients and vitamins, and in severe cases, osteoporosis.
The initial treatments for these conditions is a course of antibiotics to eliminate the overgrowth and then replenishment of a normal microbiome via the use of various probiotics containing high colony forming units of healthy normal gut bacteria. In some more resistant cases the use of fecal transplant therapy (FTT) may be employed. This is a recently approved therapy where the patient is given several doses of capsules containing healthy gut bacteria that are collected from the fecal matter of a select healthy donor pool. While it sounds gross, it's quite effective. It also helps to diminish the sting of the well know curse "eat shit and die"😉
There other less noxious remedies one can try such as consumption of various fermented beverages such as kambucha or kefir which contain beneficial bacterial strains. The consumption of yogurts with fortified with various strains of bacteria to replenish a normal gut mmicrobiome has also been show to bei don't know here moderately effective in someI patients.
The consumption of a probiotics enriched in bacterial strains that produce short chain fatty acids (SCFAs), particularly butyrate, also has been shown to help restore balance to the gut-brain axis by modulation of both the enteric and central nervous system. SCFAs also have anti-inflammatory properties and down regulate the activation of microglial cells that drive neuroinflammation and small peripheral nerve fiber demyelination.
Returning to GERD, as many people on this forum with GERD have noted the difficulty in weaning themselves off their PPIs or H2RAs they’ve been taking for acid suppression. They often will experience rebound reflux and other GI discomfort if they try to quit “cold turkey” or slowly reduce their dosage. They must be slowly weaned off their acid suppressant in a gradual step wise fashion to hopefully avoid this.
While they are doing this there are a few safe and moderately effective OTC remedies the that they may find useful in aiding their withdrawal from acid suppressants. I had mentioned a few of these in my previous post but here’s a list of a few that GERD sufferers may want to try.
Consumption of non-dairy, plant based milks.
Drinking camomile, licorice or ginger teas, coconut water, aloe vera drinks and non acidic carrot or cucumber juices. All of these may help neutralize and partially suppress stomach acid production.
Chewing sugar free gum after a meal or during the day can stimulate siliva production that helps to temporarily neutralize stomach acid.
A tablespoon of baking soda dissolved in water will also provide temporary neutralization
Also the use of products that contain algenates such as Gaviscon will help form a barrier the floats atop of the gastric contents and forms a temporary barrier that prevents reflux of gastric contents into the esophagus.
Avoid fatty foods which may increase acid production and avoid caffinated beverages, colas carbonated beverages.
Lastly, avoid tobacco and nicotine containing products as well as dark chocolate as they all lower esophageal spincter opening pressures and exacerbate acid reflux.
I hope you find this information useful

REPLY
@davidwrenn

I am retired biomedic scientist I worked on the clinical development and launch of Prilosec in the US market. Many people and physicians, other than gastroenterologists, are still not familiar with the side effects that may occur in patients with long term use of acid suppressants like PPIs (prilosec etc) and H2RAs (pepcid etc).
The chronic suppression of acid secretion can cause a number of adverse events. One that is particularly problematic besides chronic gastrtis and gastric nodule formation are changes in the normal bacterial strains that colonize the normal gut (normal microbiome). Prolonged use of acid suppressants may cause the overgrowth of various deleterious bacterial species such as C. Difficile and others pathogenic strains. This may lead to severe diarrheal disease or small intestinal bacterial overgrowth (SIBO). This causes abdominal bloating, cramps, chronic diarrhea, malabsorption of nutrients and vitamins, and in severe cases, osteoporosis.
The initial treatments for these conditions is a course of antibiotics to eliminate the overgrowth and then replenishment of a normal microbiome via the use of various probiotics containing high colony forming units of healthy normal gut bacteria. In some more resistant cases the use of fecal transplant therapy (FTT) may be employed. This is a recently approved therapy where the patient is given several doses of capsules containing healthy gut bacteria that are collected from the fecal matter of a select healthy donor pool. While it sounds gross, it's quite effective. It also helps to diminish the sting of the well know curse "eat shit and die"😉
There other less noxious remedies one can try such as consumption of various fermented beverages such as kambucha or kefir which contain beneficial bacterial strains. The consumption of yogurts with fortified with various strains of bacteria to replenish a normal gut mmicrobiome has also been show to bei don't know here moderately effective in someI patients.
The consumption of a probiotics enriched in bacterial strains that produce short chain fatty acids (SCFAs), particularly butyrate, also has been shown to help restore balance to the gut-brain axis by modulation of both the enteric and central nervous system. SCFAs also have anti-inflammatory properties and down regulate the activation of microglial cells that drive neuroinflammation and small peripheral nerve fiber demyelination.
Returning to GERD, as many people on this forum with GERD have noted the difficulty in weaning themselves off their PPIs or H2RAs they’ve been taking for acid suppression. They often will experience rebound reflux and other GI discomfort if they try to quit “cold turkey” or slowly reduce their dosage. They must be slowly weaned off their acid suppressant in a gradual step wise fashion to hopefully avoid this.
While they are doing this there are a few safe and moderately effective OTC remedies the that they may find useful in aiding their withdrawal from acid suppressants. I had mentioned a few of these in my previous post but here’s a list of a few that GERD sufferers may want to try.
Consumption of non-dairy, plant based milks.
Drinking camomile, licorice or ginger teas, coconut water, aloe vera drinks and non acidic carrot or cucumber juices. All of these may help neutralize and partially suppress stomach acid production.
Chewing sugar free gum after a meal or during the day can stimulate siliva production that helps to temporarily neutralize stomach acid.
A tablespoon of baking soda dissolved in water will also provide temporary neutralization
Also the use of products that contain algenates such as Gaviscon will help form a barrier the floats atop of the gastric contents and forms a temporary barrier that prevents reflux of gastric contents into the esophagus.
Avoid fatty foods which may increase acid production and avoid caffinated beverages, colas carbonated beverages.
Lastly, avoid tobacco and nicotine containing products as well as dark chocolate as they all lower esophageal spincter opening pressures and exacerbate acid reflux.
I hope you find this information useful

Jump to this post

Dear Dr. Wrenn - WOW! Thank you for the detailed and informative article. Hard pass on the FTT {gag!} but I really appreciate the various remedies you mention. I am using the 6-week tappering off process mentioned by an Admin here, and I'm keeping close track of where I'm at in the process, as well as how my gut is feeling. I use Silk Original Unsweet Almond Milk in place of dairy milk. I drink a lot of regular tap water, have regular coffee only in the morning, and drink decaf tea (including ginger and camomile) the rest of the time. I love all things ginger, and I put a teaspoon of ginger-honey crystals in my vanila Greek yogurt. I'm trying to avoid fatty foods. I'm not a big chocolate fan, though dark chocolate is best, and I've never used tobacco. I've dissolved baking soda in water before, and it usually works. Thanks to your suggestions, I'll pick up some coconut water and sugar free gum. I've found that 1 or 2 Tums have been helpful at times. Any comments you have to share about using Tums occasionally would be helpful. Thank you so much!

REPLY

Tums are great for temporary relief
I've used them in a pinch, but the chalkiness is a tad off putting to me. Another OTC remedy that used to be available is AlksSeltser chewing gum. It worked great! It had a nice spearmint flavor and would provide near immediate relief
Sadly, it's no longer on the market. I find that chewing peppermint gum after a a small glass of a baking soda dissolved in Evian or plain old tap water works almost as well. I apologize if you found my attempt at humor re FTT offensive, but I couldn't resist😉

REPLY

Hi @piross1528 ,

That is very interesting. I, too, took pantoprazole for years for my GERD--and then suddenly developed SFN. I don't know if the pantoprazole was the cause. I first developed some odd numbness in my toes, especially in my middle toes. I thought it was related to wearing tight shoes---so my doc said. But then I had a medical test, followed by a raging UTI, and the prescription of ciproflaxin, a strong antibiotic. The result: within days the numbness, tingling, burning, etc had progressed to my thighs. It has remained so for 3.5 years, despite many tests, meds, etc.

I think Dr Wrenn is right that these proton pump inhibitors can cause all sorts of problems when taken for very long periods. I stopped mine altogether for about six months, and now take it once every 3 days or so. My GERD is under control, but the SFN remains.

The most helpful thing for me, frankly, has been meditation and acceptance of a condition that no one can fully understand. Living with the pain, not allowing my fear to overwhelm me.

All the best to you,
Dave

REPLY
@davidwrenn

I am retired biomedic scientist I worked on the clinical development and launch of Prilosec in the US market. Many people and physicians, other than gastroenterologists, are still not familiar with the side effects that may occur in patients with long term use of acid suppressants like PPIs (prilosec etc) and H2RAs (pepcid etc).
The chronic suppression of acid secretion can cause a number of adverse events. One that is particularly problematic besides chronic gastrtis and gastric nodule formation are changes in the normal bacterial strains that colonize the normal gut (normal microbiome). Prolonged use of acid suppressants may cause the overgrowth of various deleterious bacterial species such as C. Difficile and others pathogenic strains. This may lead to severe diarrheal disease or small intestinal bacterial overgrowth (SIBO). This causes abdominal bloating, cramps, chronic diarrhea, malabsorption of nutrients and vitamins, and in severe cases, osteoporosis.
The initial treatments for these conditions is a course of antibiotics to eliminate the overgrowth and then replenishment of a normal microbiome via the use of various probiotics containing high colony forming units of healthy normal gut bacteria. In some more resistant cases the use of fecal transplant therapy (FTT) may be employed. This is a recently approved therapy where the patient is given several doses of capsules containing healthy gut bacteria that are collected from the fecal matter of a select healthy donor pool. While it sounds gross, it's quite effective. It also helps to diminish the sting of the well know curse "eat shit and die"😉
There other less noxious remedies one can try such as consumption of various fermented beverages such as kambucha or kefir which contain beneficial bacterial strains. The consumption of yogurts with fortified with various strains of bacteria to replenish a normal gut mmicrobiome has also been show to bei don't know here moderately effective in someI patients.
The consumption of a probiotics enriched in bacterial strains that produce short chain fatty acids (SCFAs), particularly butyrate, also has been shown to help restore balance to the gut-brain axis by modulation of both the enteric and central nervous system. SCFAs also have anti-inflammatory properties and down regulate the activation of microglial cells that drive neuroinflammation and small peripheral nerve fiber demyelination.
Returning to GERD, as many people on this forum with GERD have noted the difficulty in weaning themselves off their PPIs or H2RAs they’ve been taking for acid suppression. They often will experience rebound reflux and other GI discomfort if they try to quit “cold turkey” or slowly reduce their dosage. They must be slowly weaned off their acid suppressant in a gradual step wise fashion to hopefully avoid this.
While they are doing this there are a few safe and moderately effective OTC remedies the that they may find useful in aiding their withdrawal from acid suppressants. I had mentioned a few of these in my previous post but here’s a list of a few that GERD sufferers may want to try.
Consumption of non-dairy, plant based milks.
Drinking camomile, licorice or ginger teas, coconut water, aloe vera drinks and non acidic carrot or cucumber juices. All of these may help neutralize and partially suppress stomach acid production.
Chewing sugar free gum after a meal or during the day can stimulate siliva production that helps to temporarily neutralize stomach acid.
A tablespoon of baking soda dissolved in water will also provide temporary neutralization
Also the use of products that contain algenates such as Gaviscon will help form a barrier the floats atop of the gastric contents and forms a temporary barrier that prevents reflux of gastric contents into the esophagus.
Avoid fatty foods which may increase acid production and avoid caffinated beverages, colas carbonated beverages.
Lastly, avoid tobacco and nicotine containing products as well as dark chocolate as they all lower esophageal spincter opening pressures and exacerbate acid reflux.
I hope you find this information useful

Jump to this post

Thank you so much for all your info. I have what they call chemo induced neuropathy. Oncologists told me it would go away when treatment was done and here I am going on two years and it is getting worse. Gabapentin for a year and stopped, my memory is getting so bad due to the Gabapentin. No one offers any solutions and I am left to deal with the neuropathy on my own. Your information is most helpful. I had heard about too much anti acids so I am trying to stay off of them. I will definitely try some of your recommendations. Anymore info is appreciated. Thank you.

REPLY
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