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

Hey Kevin,

Please excuse the super long delay in response. Did you ever see any improvements in you neuropathy with discontinuation of PPI? Just wondering. Hope all is well.

hey dwright007, wondering if you have seen any improvement in you SFN symptoms since the discontinuation of your PPI? I cannot say for sure what is causing my SFN damage, but PPI was the only thing I was on at the time of onset. Hoping all is well.

I too am blaming the nexium. I was diagnosed with auto somal dominant polycystic liver disease and my Dr. Put me on 2 nexium a day. I complied next thing I got nerve pain in my back leg and have been diagnosed with several conditions including neuropathy

Hey! What type of neuropathy do have you been diagnosed with?

I have never done a Chat room like this, but I am compelled by my own experience to join and hope that the medical community takes this seriously. I began to experience neuropathy in my feet with rapid onset after cardiac ablation surgery. I had been taking 40mg pantoprazole daily prior to surgery , and the cardiologist increased that to 80mg for 8 weeks following surgery. I did not connect my onset of neuropathy with the increase in protonix until a few months later (after extensive neuro evaluation ) when I went off my protonix for a few days when I had a gap in my scrip. I noticed a clear receding of the neuropathy during this gap (in which I switched to H2). Then I began to experiment with intermittent switching between protonix and H2. It was darn clear that the protonix was the culprit in my neuropathy. Then the epiphany that the onset coincided with the increase to 80mg a few months earlier. I am trying to figure out how to move away permanently from PPI's. This chat room is helping me.

Hello Steve -- your experience with PPI is interesting, in that I've been taking lowest-possible doses of omeprazole for years but attempts to stop it result in more stomach pain than I'm prepared to tolerate. I'm told it interferes with calcium metabolism, and since I'm small-boned and osteopenic, it worries me that if I ever get a knee replacement it might not go well. The surgeon I saw last week said I wasn't a TKR candidate because of the neuropathy. I'll be following you hoping to learn more.

Hello @misu and @stevel3333, Welcome to Connect. Since you were discussing PPIs and neuropathy, I thought I would share a reference I found on the topic in case you haven't seen it.

--- How can proton pump inhibitors damage central and peripheral nervous systems?:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7716020/
I've had a knee replacement and also have osteopenia but fortunately I'm not on a PPI. I also have idiopathic small fiber peripheral neuropathy which wasn't affected by having a TKR.

Have you done any research or looked into any alternatives for taking PPIs?

Interesting. I am also on protonix 40 mg. Idk what the answer is because I take strong antiinflammatory whick really irritates my stomach! It’s bad anyways! Have u found anything to replace poi. What is H2?

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.

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?