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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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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?
Has an complained of pain in hands after injecting the lowest dose of Zepbound 2.5mg. This symptom has occurred x3. Will not take 4th dose.
Welcome @save4forever, Sorry to hear that you are having the neuropathy pain symptoms in your hands after taking the Zepbound injections. You can report the side effects to Medwatch - - https://www.fda.gov/safety/medical-product-safety-information/medwatch-forms-fda-safety-reporting. @projfan reported similar side effects and may have some suggestions.
Have you talked with your doctor about the side effects and/or reported the side effects to Medwatch?
@save4forever Congratulations on identifying this and taking action! Agree with @johnbishop that reporting to MedWatch is action we can all take to help other people in the future.
What to do next to help yourself depends on your specific situation. Time and distraction may cause the symptoms to fade. If you do not have experience with chronic (rather than acute) pain, you may not have discovered that it can get worse when you focus attention on it and better when you focus attention on other things -- welcome to your brain at work. So the more you can get fully engaged in work or play or social engagements, the better.
At the same time, you may want to talk with your doctor about whether there might be more than one trigger for the pain, and something you can do to address those triggers. In my case, I've cut vitamin B6 from all the supplements I take. In your case, you might want to check for osteoarthritis in the hands, for example.
There are tests that can be done for other sources of PN as well. If yours continues to progress -- the pain or other symptoms get worse, or move up from your hands into your arms -- you may want to get a referral for those tests. Some of those other sources of PN are more treatable than DIPN.
Finally, if the pain in your hands is getting in the way of living your life, you may want to consult with a physical therapist for targeted exercises or an occupational therapist for workarounds. Make sure these are people with PN experience. In fact, you might want to get a referral from an oncologist, since most DIPN is related to taking cancer drugs, so oncologists are the folks with experience here.
Having said all that, there's still the matter of dealing with whatever caused you to start zepbound in the first place. Presumably, that problem has not gone away. You can try other drugs or forms of GLI-1 RAs (I'm now on a very low dosage of Ozempic). Or you could explore bariatric surgery, keeping in mind that you can stop that exploration at any point, and having an initial consultation is not making a commitment.
If you are like me, and have been gaining and losing and gaining and losing weight for decades, you've tried all the other lifestyle options, so drugs and surgery are pretty much what's left.
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2 ReactionsHas anyone had success using Lifewave's phototherapy patches with PN?
@markewer, There have been members who have commented on the patches in other discussions but I don't have any experience with them. Here's a search of Connect with links to the different comments on LiveWave patches - https://connect.mayoclinic.org/search/.
@markewer
I used the patches for a year and they did absolutely nothing!