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Drug-induced PN due to tirzepatide

Posted by projfan @projfan, Mar 25, 2025

Just a heads-up that sometimes, peripheral neuropathy can be traced to a new drug. Having gone through the usual tests, and finally landing in front of a hematologist for possible MGUS, I seem to have a definitive diagnosis. I don't have MGUS (apparently the test results were a false positive due to a recent infection). However, although he was not a neuropathy specialist, he does have lots of experience with drug-induced peripheral neuropathy, which is distressingly common when chemotherapy drugs are used.

After taking a thorough history to confirm the research he had done offline on my case, and doing a variety of physical checks, he concluded that the source of the problem was tirzepatide (zepbound). Apparently this is a known, low-probability (< 1%) side effect, although the mechanism causing it with this particular drug is unclear. This is not a problem with semaglutide (mounjovy or ozempic).

So if you already have symptoms of PN and are thinking about taking one of the new weight-loss drugs, I would really encourage you to avoid zepbound.

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

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justonesearching | @justonesearching | 2 days ago
In reply to @projfan "I did not think to try the compounded version of the drug -- excellent probe. In..." + (show)
Profile picture for projfan @projfan

I did not think to try the compounded version of the drug -- excellent probe.

In my case, transitioning to semaglutide stopped the progression, although to the best of my knowledge, the damage caused up to that point is essentially irreversible. We'll both of us have to keep an eye out for future DIPN publications that may prove helpful!

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@projfan thank you for this. I had to stop tirzepatide for a procedure and noticed the PN and foot cramps disappeared. When I started back up a month later, they started again. I switched to a different compounded version without glycine but still had the PN. I am now going to try semiglutide as I really don’t want to gain the weight back. I am hopeful I’ll have the same response as you did.

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justonesearching | @justonesearching | 2 days ago
In reply to @projfan "You have my complete sympathy, both for the symptoms and the challenges finding help for something..." + (show)
Profile picture for projfan @projfan

You have my complete sympathy, both for the symptoms and the challenges finding help for something that is as rare as non-oncological DIPN -- in my experience, no one really knows what to do about it. Although to be fair, pretty much no one knows what to do about oncological DIPN, either. I've got a running weekly JAMA search on DIPN, and it keeps coming up with essentially nothing of any use, arguing that it's even an unpromising study area. (A search for tirzepatide or semaglutide, however, produces dozens of results every week. None of which, of course, mention DIPN.) So completely agree with @johnbishop : about the only thing you can get from a neurologist is advice on how to keep it from getting worse (avoid vitamin B6, for example). Beyond that, this is a great forum for finding practical things you can do to just cope, like, for example, orthotics or shoes or socks.

Welcome to a very special club!

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@projfan curious on avoiding B6. Can you share what you’ve found?

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justonesearching | @justonesearching | 2 days ago
In reply to @jldanenhower "@moddydammy Yes please share. I’ve been experiencing neuropathy in my feet and hands and weird sensation..." + (show)
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@moddydammy
Yes please share. I’ve been experiencing neuropathy in my feet and hands and weird sensation on all of my skin. Even my lips have a strange tingling feeling when you tap them.

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@jldanenhower I’ve been have strange zaps and tingles in my face too. Scary

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projfan | @projfan | 2 days ago
In reply to @justonesearching "@projfan curious on avoiding B6. Can you share what you’ve found?" + (show)
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@projfan curious on avoiding B6. Can you share what you’ve found?

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@justonesearching Excess B6 is notorious for triggering PN, so I switched to a multivitamin without it: Desert Harvest brand. However, if you haven't been taking a high-dose multi, this is unlikely to be your problem -- ask your doctor for a blood test to be sure.

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projfan | @projfan | 2 days ago
In reply to @justonesearching "@projfan thank you for this. I had to stop tirzepatide for a procedure and noticed the..." + (show)
Profile picture for justonesearching @justonesearching

@projfan thank you for this. I had to stop tirzepatide for a procedure and noticed the PN and foot cramps disappeared. When I started back up a month later, they started again. I switched to a different compounded version without glycine but still had the PN. I am now going to try semiglutide as I really don’t want to gain the weight back. I am hopeful I’ll have the same response as you did.

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@justonesearching I would call that reliable evidence of a connection. There are several other drugs in the family as well, if semaglutide doesn't do it for you. Alternatively, you could consider bariatric surgery, but unfortunately, you might need to put the weight back on for insurance to approve it.

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