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18 months on a PPI and SFN, a possible connection?

Posted by llmartin @llmartin, 3 hours ago

I would never have known there was a connection between PPI use and neuropathy had it not been for those posting about it here. I was on pantoprazole 40 mg per day for 18 months. In December I noticed my feet would burn painfully after a walk and sometimes just sitting around at night my toes would start to burn. All my blood tests, e.g. B12 and diabetes, didn't show anything. I have an appointment with a neurologist tomorrow to see what's up. In the meantime I have been tapering off of the pantoprazole for about 8 weeks. It will probably take another eight weeks to be completely off. This has been a struggle but I'm getting by with all the OTC stuff. And I'm motivated. Yesterday I found another study conducted by Kaiser in 2013 showing a likely connection. Funny how doctors prescribe these and let us stay on them indefinitely. So I'm posting to tell my story and keep the conversation going. Thank you for being here, and thank you for letting me share.

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

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joanland | @joanland | 2 hours ago

@llmartin Thank you for posting. I did not know of the connection between PPI and neuropathy. I was on a PPI for years, took myself off, a new MD (previous one left the practice) put me back on a PPI. So I've been on and off and on again. During this process, I was diagnosed with idiopathic progressive peripheral neuropathy, and have been under the care of a neurologist, and now under the care of an even more experienced primary care provider. No medical provider has mentioned the possible relationship between PPI and neuropathy. I'll ask at my March appointment. Thank you for your post.

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llmartin | @llmartin | 1 hour ago
In reply to @joanland "@llmartin Thank you for posting. I did not know of the connection between PPI and neuropathy...." + (show)
Profile picture for joanland @joanland

@llmartin Thank you for posting. I did not know of the connection between PPI and neuropathy. I was on a PPI for years, took myself off, a new MD (previous one left the practice) put me back on a PPI. So I've been on and off and on again. During this process, I was diagnosed with idiopathic progressive peripheral neuropathy, and have been under the care of a neurologist, and now under the care of an even more experienced primary care provider. No medical provider has mentioned the possible relationship between PPI and neuropathy. I'll ask at my March appointment. Thank you for your post.

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@joanland thank you for replying. I could not find the link and would probably have trouble sharing it if I did, but in several discussions in the neuropathy support group last year, many contained links to relevant studies. It will be interesting to see if your doctor can tell you anything. There is so much research to keep up with nowadays, sometimes sometimes our doctors don't know and we have to be our own advocate. I do hope you find some solutions that work for you in dealing with this terrible disease. Please keep us posted on your progress. Kind regards, L

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