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.
Interested in more discussions like this? Go to the Neuropathy Support Group.
I received an acknowledgement from the FDA that my submittal was received, so there's that.
Just yesterday October 16 I started feeling terrible pain in both feet and can hardly walk. Last Sunday I took my first injection of zepbound 10mg.
I started months ago at lower doses.What can I do please.
I read others letters and it said once it starts it never goes away. Is that
true. What other diet drug may I change to. Thanks Janie
Welcome Janie @jmaher, Sorry to hear that you are having neuropathy type side effects following your zepbound injection. I would definitely talk with my doctor if it were me to see if there might be an alternative or something that would alleviate the neuropathy side effects.
Have you talked to your doctor about the new symptoms?
@jmaher Agree with John that the first thing to do is talk with your doctor.
Having said that, most doctors do not make the connection between zepbound and neuropathy symptoms -- the normal process of diagnosing peripheral neuropathy can take months, because they are likely to explore other causes first. It is possible that this is a coincidence, and the two things just happen to be occurring at the same time.
In the meantime, consider talking with your doctor about cutting back on the zepbound dosage right away, to see if that makes a difference to your symptoms. If you go back to a lower dose (either 7.5 mg or 5 mg) and the pain becomes less or goes away, that will tell you and your doctor something about what might be going on. Also, if you take vitamins, check the amount of Vitamin B6 in your supplements. If it is more than the RDA, consider switching to a vitamin with no more than the RDA of B6 (neuropathy can also be caused by, or made worse by, too much B6). These are both pretty harmless things to try. If you do this, and it helps quickly, you can try dropping even lower. If it doesn't help right away, give it a couple of weeks to see if it just takes time to work the drug and vitamin out of your system.
No matter what, let your doctor know if it keeps getting worse, starts getting better, or stays about the same.
There are other drugs in the same family, both older drugs (like semaglutide and liraglutide) available now, and new drugs that are not out yet and you can try in the future. You can talk with your doctor about switching over, especially if you try a lower dose of the zepbound and that helps. In general, the recommendations I've seen are to slowly drop the dose on the zepbound, switch, and start the new drug at the starting dose of the new drug.
It's great that you caught this quickly. Have you lost most of the weight that you want to lose, or just some of it? Is the pain keeping you from sleeping?