Medication linked to Peripheral Neuropathy

For what it's worth, I was finally diagnosed for drug-induced peripheral neuropathy by a cancer specialist in hematology. The drug had nothing to do with cancer (it was zepbound/tirzepatide, which is a weight loss drug that's a variant on a prior diabetes drug). However, the majority of drugs that induce peripheral neuropathy are cancer drugs, so at least in my case, it took a cancer specialist (long story) to take the possibility seriously. For the rest of the medical community, from what I can tell, DIPN is so unlikely that they don't even consider it. And in fact, the probability of DIPN from tirzepatide is a lot less than 1%, no one actually talks about this side effect, no one's trained to look for it, there's negligible literature about it, and the info is so buried on the manufacturer's website that it's almost impossible to find, so, you know, fair.

You may need a referral to someone who specializes in DIPN, and that person may need to invest a fair amount of time in evaluating your particular drug suite to give you any insight. You may also find that your local pharmacist can either give you insight, or suggest a specific local physician who might be helpful.

I am new to this site and find it very informative I have had issues with radiculopathy{cervical discs] for 10+ years helped somewhat by therapy pain minimal muscle loss. Non diabetic neuropathy tingling in toes 15+ years progressing to ankles and recently past 3 yrs to below knees.. also caused by discs compression (age related) based on MRI and EMG testing....No pain at all in legs or feet only tingling/numbness..I Am an active 85 yr old, walk 4-5 miles daily, only med is atovastatin 20mg for past 15 yrs..I would be interested in knowing if anyone has had adverse reactions from long term use of statins, or any info on how to slow progression of neuropathy.
thanks. DickB

Welcome @dickjoan, I think walking 4 to 5 miles daily at age 85 is pretty awesome and is a plus for helping your neuropathy. Like you I don't have any pain with my neuropathy that started in my late 40s and gradually progressed into my legs. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I'm 82 now but can't walk very far due to lower back issues more than the neuropathy. There are quite a few members who have mentioned long term use of statins if you want to scan through their comments - https://connect.mayoclinic.org/search/comments/?search=long%20term%20use%20of%20statins.

Not sure if you have seen the Foundation for Peripheral Neuropathy site, but it has a lot of good information that you might find helpful - https://www.foundationforpn.org/living-well/

Good morning, Dick (@dickjoan)

Allow me also to welcome you to Connect! I think you'll find, as I did, this to be a most rewarding site.

I'm 80. I have idiopathic large-fiber neuropathy, so no pain but lots of balance problems. I was diagnosed in the summer of 2022, but once I knew why my balance was going all-wonky, I realized the onset of my problem had begun many yeas before, easily 10 years before, when I attributed my increasing wobbliness to age.

I applaud your walking 4-5 miles a day! In my book, that's astonishing. I used to be able to walk long distances, but no more.

For me, it's a combination of leg weakness (which I work on to improve) and shortness of breath (thanks not so much to my neuropathy but to a septic infection I had last year).

I, too, take atorvastatin, but only since last year (because of the septic infection). Only the other day I set a message to my primary doc asking if I would have to continue taking atorvastatin or could I one day be taken off of it. I haven't heard back from her yet.

As far as slowing neuropathy's progression, my only advice (based strictly on my own experience) is to keep moving (which it sounds like you already do). My life is largely sedentary, sitting at this laptop, but I've a kitchen timer just off the side of the laptop a-ticking away to remind to get up and move around every 25-30 minutes.

And as it is about to signal for my next git-up-and-move, I'll end this, again saying, Welcome to Connect!

Cheers!
Ray (@ray666)

I have Small Fiber Neuropathy and Sogjren's Syndrome, I am CONSTIPATED ALL THE TIME have rectal pain, near tailbone pain, sitting is horrible, I can't take any more !!!! I had to cancel my dr. appoints because of it! I appt. with my Neurologist who never returns calls!!! I see him on Tues I will ASK WHY?? He orders my IVIG. Do other patients feel relief from it? Afraid to stop, maybe it does help? Rumatologist I will on this Tues. He wants to discuss with me my recent blood work. Just had jell in my knee, it's time, my knee hurts so badly I can hardly walk. My appt. is June 30!! No other openings. too much pain every day!!!! Does anyone have a spouse who is good to me but has NO EMPATHY!!!!!!!! GOING SOME WHERE AND LEAVING ME ALONE FOR 6 HOURS, HE CALL 911 IF YOU FALL!

I agree with your advice, Ray. Movement is very important. Like you, I was once able to walk greater distances. Now not so much. But I do try to walk every day and am now in physical therapy. My muscles have weakened so I am trying very hard to strengthen them. The wobbly leg feeling is very disconcerting. I also say that medicine can play an adverse role in this neuropathy challenge.

thanks for your comments, I look forward to communicating with more PN
individuals.running and walking has been part of my life for many years. you mentioned that you used a timer to remind you to move, I have an Apple watch
which my kids gave me 10 yrs ago, didn't use much at first but I'm now on my third one latest generation. reminds me to stand/move keep tract of some vitals
and notifies family or ? if I have fallen...lots of other features...there are many other similar products by other providers, my watch is paired to my apple phone.I am on the statin for cholesterol control which statins have been good for me but always wondered if related to progression of neuropathy. good luck and hope you can get into some exercise program(have you tried stationary bike, not so hard on your back)

Good morning, Dick

I was a running fool in my younger days, as any here know; I shied from team sports as a teen, instead ran track. Then years past with my running nary a mile––until the '70s when the running craze kicked in. Watching Shorter win the Olympic marathon got me all fired up to start doing miles again; I continued doing miles until bone-on-bone plus a TKR in the early 2000s put the kibosh on my running days. So I sympathize with all you say.

I'm afraid no Apple watches for me. I'm an old-fashioned kind of guy: I abhor "devices." LOL That's why I love my kitchen timer with it's incessant tick, tick, tick. The fewer devices (i.e., all things digital––with apologies to this MacBook Pro!) I have around, the happier I am. I may be the only guy in Denver whose only clock is an analogue clock. LOL

My question to my PCP about continuing vs. discontinuing the atorvastatin has all to do with that particular med being what seemed a "sidecar" med ("Let's give Ray some of this too, just in case … ") when I was in the ER with the septic infection. None of the hospital docs were able to connect a specific septic symptom to the specific statin they were prescribing. When it comes to drugs, I'm kind of the same guy who shies way from all things algorithmic: the fewer, the better! LOL

A stationary bike? Yup! It's a old squeaky one, but it's right here in the room with me, just beyond my kitchen timer.

Have a glorious weekend, Dick.

Ray (@ray666)

Good morning, arcuri24 (@arcuri24)

I have found strengthening my enfeebled leg muscles to be much more difficult than I had originally thought it would be. I'd gone darn near a full half-year with limited mobility: a hospital stay, followed by a rehab facility stay, followed by several months of at-home rehabbing (mostly recliner-bound). I thought once I was back on my feet and back into shoes (atop my orthotics), a couple of vigorous weeks on my stationary bike, plus leg-lifts and sit-to-stands, and presto! my legs would e back to full-strength. Fool that I was! I'm now 14, going on 15 months post-septic infection and my legs are still rubbery. But I keep at it (moving)! Despite how challenging this leg-rebuilding is proving to be, I still maintain it's our one and only return path to wholeness.

Have an enjoyable weekend!
Ray (@ray666)

I agree with you that we must not give up. The alternative is atrophy and worse. I am trying so hard to build muscle that I lost almost seemingly overnight. Cancer was ruled out through several stress-inducing tests. Stress is also a culprit. We must also keep our sights on good food--less sugar ( I am not diabetic) and plenty of water. You seem to be doing all the right exercises to build strength. I know the wobbly leg syndrome can be discouraging but try we must!