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Drug-induced PN due to tirzepatide
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.
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Has anyone experienced neuropathy as a side effect with taking Zepbound. My neuropathy began two months after beginning Zepbound. I continued taking it because both my primary and neurologist told me that neuropathy is not a side effect of Zepbound. However, every time I take the shot, my symptoms seem to get worse.
Hello @finnj01,
I combined your discussion with an existing discussion titled:
"Drug-induced PN due to tirzepatide"
- https://connect.mayoclinic.org/discussion/drug-induced-pn-due-to-tirzepatide/
Here, you can meet @profjan, @rainyb91566, @save4forever.
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@finnj01 You have my sympathy -- if you have a chance to scroll through my earlier experiences, you will learn that it took me a long time to find a physician who understood that this is a known side effect of zepbound. It's just a really, really unlikely one, and is rare enough that reasonable experts can conclude that the apparent correlation does not mean causation.
Fortunately/unfortunately, none of these people can do anything about it that you cannot do for yourself -- I would love for someone who is reading this to prove me wrong, of course.
There are three possible underlying truths here: (1) they are right, and it's not the zepbound; (2) they are wrong, and the PN is zepbound dose-dependent; (3) they are wrong, and the PN is not zepbound dose-dependent. In the case of either (2) or (3), you have one of two possible situations on your hands: (a) the current damage is not permanent, and will go away if you eliminate the cause; (b) the current damage is permanent, and will stop progressing (get no better and no worse) if you eliminate the cause. I seem to be dealing with (2)(b).
Basically, the only way to figure this out is to change your drug consumption and monitor the impact it has on your PN. Your options are to reduce/increase the zepbound dose, switch to another weight-loss drug, or stop taking any weight-loss drugs. If your PN stays the same, gets worse, or gets better, you've learned what you need to know.
I started by gradually dropping the dosage of the zepbound, which stopped the PN progression. Because hope springs eternal, I then switched to ozempic to see if that would further improve things. It did not, but neither did it make the situation worse. (I also prefer the ozempic multi-pen, which lets me tailor my dosages better than the single-dose zepbound pen.) I could have taken the final step of dropping off weight-loss drugs altogether, and chose not to. If the PN starts progressing again, I'll revisit that decision, or perhaps switch to yet another drug.
I haven't poked at it recently, but back when I was going through this, there was very little data-driven guidance concerning how best to stop zepbound or switch from one drug to another. The advice seemed to be to ramp down to the lowest dose of zepbound before stopping it, and then start ramping up the new drug beginning with the lowest dosage normally prescribed of that new drug. This seems sensible on its face, but I'm guessing it's mostly just what anyone would suggest for any drug, and not based on any zepbound-specific evidence.
As far as I know, there are no treatments that cure PN once the nerve damage has become permanent. Lots of people try lots of things to help manage specific symptoms, all of which seem to work for some people and not for others. It's worth wading into these if/when you are ready.