I believe I am having a neuropathic reaction. Ever since I started Mounjaro in August, I have had burning pain over most of my skin. A couple of weeks ago I missed a dose, and the pain faded away. The next week I resumed my normal injection and two days later, Bingo. Pain is back. I hadn’t made the connection until now. (I had thought it was from terbinafine…). Not sure what to do now. I was on trulicity for years and had no such issues. My PCP is kinda blowing me off, blaming diabetic neuropathy. But not with symmetrical, bilateral, widespread pain that all started at once! Frustrating.
Yes! Half my body has gone numb! I was hospitalized no answers. Forgot to take it on scheduled day numbness started receding. It didn’t click that’s what it was. I took the shot and the numbness was worse than ever stop taking it and I’m just going away but not gone. My right hand is incredibly bad and I’m an artist so this is really bad.
I found one case study reporting neuropathy from semaglutide, but that's it: https://pubmed.ncbi.nlm.nih.gov/39072425/. Doesn't mean it can't happen, but it would certainly be unexpected. My neuropathy started when I was ramping up on tirzepatide (zepbound) this summer, but I'm pretty sure that was coincidence rather than causation -- still working through the diagnostic process. Switching from tirzepatide to semaglutide next week, so it will be interesting to see if it has any impact. In my case, I suspect the neuropathy has been essentially latent for many years during which I've taken a ton of neurologically-active drugs for migraines, and emerged when I shifted to a multivitamin with a triggeringly-high dose of vitamin B6 (which happened at the same time as the tirzepatide ramp-up), and may or may not be being helped or hurt by the GLP-1RA at this point. But it's just the guess of someone who is not medically trained, so who knows?
Just an update: I've been diagnosed with drug-induced peripheral neuropathy (DIPN) in my feet from tirzepatide (zepbound). Titrating down on the dosage and then switching to semaglutide has halted the progression, but my neurologist tells me that the initial damage is likely permanent -- fortunately, it's sensory, without pain. I've been on trazodone for migraines which worked well, but ultimately produced tingling and numbness in my arms, so perhaps I had a propensity in this direction. At any rate, it's a known, extremely low probabillity (< 0.4%) side effect.
For what it's worth, I was ultimately diagnosed by neurologist who works with cancer patients. For them, DIPN is a horse -- it occurs in 60% of chemotherapy patients, so they are familiar with it and know how to identify it. For any other neurologist, it's a zebra -- it's so unlikely that they rarely consider it. I was referred to oncology when my PN labs indicated MGUS. Turned out to be a temporary indicator of a prior infection, but it got me in the door to the right person for a diagnosis.
I'm old enough and have been on enough drugs over the years that sooner or later the odds were going to catch up with me, and I would be one of those people who actually turn out to have one of those extremely rare side effects. If we took seriously the possibility that we would be that person, we would probably never take any drugs, and would just die young and in pain from something that could have been treated. So most of the time, I'm just philosophical about losing this particular lottery. Some of the time, though, I can get a bit bitchy about it.
@123a I'm fine after stopping the mounjaro. Symptoms stopped. I took a few months break from shots and then switched to ozempic and I haven't had any issues.
@123a The multivitamin is Desert Harvest -- if you know of another one without B6, or with only a fraction of RDA, I'd be interested. And no, I switched from Tirzepatide to Ozempic to help manage the side effects. Tirzepatide makes use of a single-dose pen, while Ozempic is multi-dose, which means you can play with the dosage (although, of course, the manufacturer does not recommend this). I've been down to 0.25 mg/6 days for almost a year, although I increased to 0.5 mg for a while when I gained weight as a side effect of another medication.
@123a The multivitamin is Desert Harvest -- if you know of another one without B6, or with only a fraction of RDA, I'd be interested. And no, I switched from Tirzepatide to Ozempic to help manage the side effects. Tirzepatide makes use of a single-dose pen, while Ozempic is multi-dose, which means you can play with the dosage (although, of course, the manufacturer does not recommend this). I've been down to 0.25 mg/6 days for almost a year, although I increased to 0.5 mg for a while when I gained weight as a side effect of another medication.
@projfan endocrinologist increased my dosage from 5.0 to 7.5 resulting in AMYOTROPHY or thinning paralysis. Lost 35 lbs in 6 weeks 17lbs of lean muscle mass. Left leg paralyzed for 4 weeks. 8 months later still recovering from massive muscle loss from lower back, buttocks, hips, thighs and calves. Lots of PT and supplements to work at getting back. Now able to walk but my gait still not right. Watch out, no warning about this. The pain is terrible, be very careful!
@projfan endocrinologist increased my dosage from 5.0 to 7.5 resulting in AMYOTROPHY or thinning paralysis. Lost 35 lbs in 6 weeks 17lbs of lean muscle mass. Left leg paralyzed for 4 weeks. 8 months later still recovering from massive muscle loss from lower back, buttocks, hips, thighs and calves. Lots of PT and supplements to work at getting back. Now able to walk but my gait still not right. Watch out, no warning about this. The pain is terrible, be very careful!
@chuckdux Good lord. How awful. I never hit that dosage -- I was a bit of a super-responder, meaning I lost weight at low doses, raised the dose really slowly due to side effects, and started ramping back down at a much lower dose. I know that there is concern about loss of lean muscle mass on these drugs, but that's spectacular confirmation. Glad the PT is helping! If you or your doctor did not think to report this experience to the FDA, you might want to consider it, since they collect this kind of data and your experience might help others. They have an online form for just this purpose.
I was waiting in a line the other day behind someone with walking poles, and asked about them -- I've been toying with getting some, and this was the first time I was in a position to chat with someone who uses them. He told me that once upon a time he was completely paralyzed from the waist down, and his PT recommended them in lieu of a walker as he gradually relearned to use his lower body. He said that the poles were especially advantageous because they help you maintain good posture and develop and support a normal gait. I suspect I will go there if I start falling more easily. It was a really supportive and helpful conversation.
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@kfgrijr you were taking name brand Mounjaro and not a compound? Was this for weight loss? How are you doing now?
@gptach were you on compounded tirzepatide? How are you doing now?
@projfan what was the multivitamin? How are you doing now? Are you on Tirzepatide?
@projfan how are you doing now? Still on GLP 1? How are your symptoms?
@123a I'm fine after stopping the mounjaro. Symptoms stopped. I took a few months break from shots and then switched to ozempic and I haven't had any issues.
@123a Yes, still on ozempic (very low dose) and symptoms are stable -- thank you for asking.
@123a The multivitamin is Desert Harvest -- if you know of another one without B6, or with only a fraction of RDA, I'd be interested. And no, I switched from Tirzepatide to Ozempic to help manage the side effects. Tirzepatide makes use of a single-dose pen, while Ozempic is multi-dose, which means you can play with the dosage (although, of course, the manufacturer does not recommend this). I've been down to 0.25 mg/6 days for almost a year, although I increased to 0.5 mg for a while when I gained weight as a side effect of another medication.
@projfan endocrinologist increased my dosage from 5.0 to 7.5 resulting in AMYOTROPHY or thinning paralysis. Lost 35 lbs in 6 weeks 17lbs of lean muscle mass. Left leg paralyzed for 4 weeks. 8 months later still recovering from massive muscle loss from lower back, buttocks, hips, thighs and calves. Lots of PT and supplements to work at getting back. Now able to walk but my gait still not right. Watch out, no warning about this. The pain is terrible, be very careful!
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1 Reaction@chuckdux Good lord. How awful. I never hit that dosage -- I was a bit of a super-responder, meaning I lost weight at low doses, raised the dose really slowly due to side effects, and started ramping back down at a much lower dose. I know that there is concern about loss of lean muscle mass on these drugs, but that's spectacular confirmation. Glad the PT is helping! If you or your doctor did not think to report this experience to the FDA, you might want to consider it, since they collect this kind of data and your experience might help others. They have an online form for just this purpose.
I was waiting in a line the other day behind someone with walking poles, and asked about them -- I've been toying with getting some, and this was the first time I was in a position to chat with someone who uses them. He told me that once upon a time he was completely paralyzed from the waist down, and his PT recommended them in lieu of a walker as he gradually relearned to use his lower body. He said that the poles were especially advantageous because they help you maintain good posture and develop and support a normal gait. I suspect I will go there if I start falling more easily. It was a really supportive and helpful conversation.
@foz what does CIPD stand for? I asked Alexa and she said it stands for clinical documentation in the medical community.