Osteoporosis medications and neuropathy

Posted by detc @detc, Feb 19, 2024

Has anyone developed neuropathy after taking Actonel or other osteoporosis medications? I was diagnosed with Covid vaccine induced neuropathy and I’m wondering if my robust, over active immune system may respond in the same way to osteoporosis medications.

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Profile picture for mdamiani57 @mdamiani57

Mine started after a Flu shot in 2016 I've read where vaccines can confuse the immune system but who knows.

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Thank you for that information. I wish you well.

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Profile picture for mdamiani57 @mdamiani57

Me too been on both for a few years Gabapentin for nerve pain doesn't help much with the neuropathy mine it did improve after I started taking the metabolic prepared L-Folate to process B vitamins my levels of B6 and B12 were off the charts high because I have a gene that lacks the enzyme to process B6 and B12 so I had B vitamin toxicity which ironically has the same symptoms as low B12. Good luck with your journey.

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Interested in what gene would that be? And what was the test that you had done to be diagnosed? Glad you found your problem and are able to address it.

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Profile picture for dhamil @dhamil

Interested in what gene would that be? And what was the test that you had done to be diagnosed? Glad you found your problem and are able to address it.

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Doctors ran a test for it he said i do have that gene I'd have to look it up but just do a google search for it

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Profile picture for John, Volunteer Mentor @johnbishop

I'm not on any osteoporosis medications but I do have neuropathy. Hopefully others with experience can share it with you. This research from a clinical study shows "28,600 people reported to have side effects when taking Actonel. Among them, 24 people (0.08%) have Peripheral neuropathy."
--- Actonel and Peripheral neuropathy - a phase IV clinical study of FDA data: https://www.ehealthme.com/ds/actonel/peripheral-neuropathy/

I wasn't aware that there is a way to tell if your neuropathy was caused by Covid. Do you mind sharing how they diagnosed you with Covid vaccine induced neuropathy?

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I also am curious how they diagnosed the Covid neuropathy?

I have neuropathy and was on Actonel many years before neuropathy reared its ugly head. I don't feel it's related. Recently, I had another NCV and EMG testing done. That doctor told me "There's usually 2 causes for neuropathy, diabetes and we don't know. I fall in the latter.

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Profile picture for mdamiani57 @mdamiani57

Doctors ran a test for it he said i do have that gene I'd have to look it up but just do a google search for it

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Mutations in GIF, as well as in the CUBN and AMN genes have all been identified as causes for various vitamin B12 absorption deficiency syndromes. Early diagnosis and vitamin B12 administration by a medical professional is needed for those carrying these mutations.

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Profile picture for texgal57 @texgal57

I also am curious how they diagnosed the Covid neuropathy?

I have neuropathy and was on Actonel many years before neuropathy reared its ugly head. I don't feel it's related. Recently, I had another NCV and EMG testing done. That doctor told me "There's usually 2 causes for neuropathy, diabetes and we don't know. I fall in the latter.

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Welcome @texgal57, My neuropathy diagnosis is also idiopathic and my neurologist told me it was most likely hereditary. It sounds like the doctor wasn't really well versed in all of the different causes of neuropathy. Diabetes is a major cause of neuropathy but it's certainly not a case of diabetes or idiopathic (we don't know). Neuropathy Commons has a list of causes here if you want to do a little research - https://neuropathycommons.org/neuropathy/causes-neuropathy.

I'm not sure how they diagnose neuropathy from Covid but there have been some studies. Here's one of the studies:
-- Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19:
https://www.neurology.org/doi/full/10.1212/NXI.0000000000200244
If you want to see other medical research on possible causes, Google Scholar has a good list here - https://scholar.google.com/scholar?as_ylo=2024&q=neuropathy+caused+by+covid&hl=en&as_sdt=0,24.

Have you found a treatment that helps your neuropathy symptoms?

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I thought the Prolia and Covid shots started my neuropathy, and made it worse each time I had a shot

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Profile picture for John, Volunteer Mentor @johnbishop

Welcome @texgal57, My neuropathy diagnosis is also idiopathic and my neurologist told me it was most likely hereditary. It sounds like the doctor wasn't really well versed in all of the different causes of neuropathy. Diabetes is a major cause of neuropathy but it's certainly not a case of diabetes or idiopathic (we don't know). Neuropathy Commons has a list of causes here if you want to do a little research - https://neuropathycommons.org/neuropathy/causes-neuropathy.

I'm not sure how they diagnose neuropathy from Covid but there have been some studies. Here's one of the studies:
-- Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19:
https://www.neurology.org/doi/full/10.1212/NXI.0000000000200244
If you want to see other medical research on possible causes, Google Scholar has a good list here - https://scholar.google.com/scholar?as_ylo=2024&q=neuropathy+caused+by+covid&hl=en&as_sdt=0,24.

Have you found a treatment that helps your neuropathy symptoms?

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This was a neurologist I was referred to. I only saw him for the nerve testing.

I've tried Gabapentin, Lyrica, Amitriptyline, Duloxetine and currently I have a Spinal Cord Stimulator that I'm having removed. Nothing has helped.

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Profile picture for texgal57 @texgal57

This was a neurologist I was referred to. I only saw him for the nerve testing.

I've tried Gabapentin, Lyrica, Amitriptyline, Duloxetine and currently I have a Spinal Cord Stimulator that I'm having removed. Nothing has helped.

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I wouldn't give up on a search for something that might provide relief for your neuropathy pain. @solobee1 mentioned using low dose naltrexone (LDN) in another discussion here - https://connect.mayoclinic.org/comment/1152851/. There's also a discussion that might be helpful for learning what has helped others find relief.

-- Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

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