Best Antibiotics if you have PN?

Posted by Debbie @dbeshears1, Dec 27, 2022

Just wondering if anyone has experience, or links from reputable studies, of the best or worst antibiotics a person with existing PN should take (or avoid) if we have need to be prescribed one? It seems on the rare occasions I need one, my body sort of gets out of whack/weaker and makes me nervous, and I stop taking them, and seem to take weeks to get back on my feet so to say. Now I think I need some ideas in my back pocket to help work with the various doctors who prescribe for me who aren’t focused on the possible neuropathy impacts. Any help from any of you is much appreciated!

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Hi Debbie @dbeshears1, Thanks for starting this discussion. It's a great question to ask if you have neuropathy. I certainly would hope my doctor knew since they know that I have neuropathy. Here are a few references but I'm sure there are others.

-- Association Between Peripheral Neuropathy and Exposure to Oral Fluoroquinolone or Amoxicillin-Clavulanate Therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6583699/
-- Antibiotic-induced neuropathy: https://www.medlink.com/articles/antibiotic-induced-neuropathy
-- Common antibiotic may increase nerve damage and peripheral neuropathy risk: https://neurosciencenews.com/antibiotics-nerve-damage-13083/

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@johnbishop

Hi Debbie @dbeshears1, Thanks for starting this discussion. It's a great question to ask if you have neuropathy. I certainly would hope my doctor knew since they know that I have neuropathy. Here are a few references but I'm sure there are others.

-- Association Between Peripheral Neuropathy and Exposure to Oral Fluoroquinolone or Amoxicillin-Clavulanate Therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6583699/
-- Antibiotic-induced neuropathy: https://www.medlink.com/articles/antibiotic-induced-neuropathy
-- Common antibiotic may increase nerve damage and peripheral neuropathy risk: https://neurosciencenews.com/antibiotics-nerve-damage-13083/

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Thanks, as always, you know where to get to reliable sources quickly. I can get easily overwhelmed and confused by some of the hits I get, and it can be hard to sort through misinformation or not statistically representative. I also know we all react differently so one size doesn’t fit all, but you know the challenges we face…. Fix one thing at the expense of something else, so trying to find a happy medium

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Thank you for introducing this topic. I did not have an antibiotic PN experience, but I had a similar experience with prednisone.

I first experienced PN after being started on a course of prednisone by a dermatologist at 60 mg per day. This was excessive for me, as I am very sensitive to meds related to my joint hypermobility and my regular doctor usually prescribes meds for me starting at one tenth of a dose.

The prednisone caused almost immediate numbness and leg weakness up to my knees. I stopped taking it after two days, but the numbness, without pain, has remained in my toes and undersoles and is slowly extending upward.

I have raised the steroid-PN connection with my doctors, but none have taken it seriously. Your experience with antibiotics has given me some confidence that my experience has been real.

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@dbeshears1

Thanks, as always, you know where to get to reliable sources quickly. I can get easily overwhelmed and confused by some of the hits I get, and it can be hard to sort through misinformation or not statistically representative. I also know we all react differently so one size doesn’t fit all, but you know the challenges we face…. Fix one thing at the expense of something else, so trying to find a happy medium

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dbeshears1 -- I've been given somewhat strong antibiotics in 2009 and in 2012, hospitalized 3 days and was given Vancomycin. I questioned my primary and neuro doc about antibiotics being a possible cause for PN. Since there is no test to determine that, without proof, there is little room for discussion. But, along the lines of your comment, I also mentioned in 2021 that IF... IF the cause of PN were antibiotics, what would now be prescribed to someone with PN? I'm told that when there is a need for an appropriate antibiotic. it has no impact on someone with PN. I feel many primary docs are not aware of any possible relationship between these drugs and PN. Their position is where is the proof. Right!

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@njed

dbeshears1 -- I've been given somewhat strong antibiotics in 2009 and in 2012, hospitalized 3 days and was given Vancomycin. I questioned my primary and neuro doc about antibiotics being a possible cause for PN. Since there is no test to determine that, without proof, there is little room for discussion. But, along the lines of your comment, I also mentioned in 2021 that IF... IF the cause of PN were antibiotics, what would now be prescribed to someone with PN? I'm told that when there is a need for an appropriate antibiotic. it has no impact on someone with PN. I feel many primary docs are not aware of any possible relationship between these drugs and PN. Their position is where is the proof. Right!

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I understand the difficulty all around. They can’t prove antibiotics cause PN or hurt those who already have PN; on the flip side, there’s no proof antibiotics DON’T hurt those with PN. And it’s not a major research interest. When I ask about it when I’ve been prescribed by dentist, eye doctor, and even my PCP, I get a confused look. I asked my Neurologist 2 weeks ago and got a “I don’t know” as I got in reply to several other questions I had for him. Bottom line is that those of us affected are all searching for cause and effects that help us or hurt us so we can adjust accordingly, whether we think it’s antibiotics, vaccines, coffee, or sugar etc. I have felt setbacks weeks after taking antibiotics and wish they could help us make more informed decisions. So for now, if I need an antibiotic, I stop taking them after a few days if I’m feeling better or if my legs feel weaker, whatever comes first. I won’t finish the prescription because I have to make a choice between the potential injuries of the decision. Luckily, I have had a couple of doctors say it’s not always terrible to stop them as it was once believed.

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@dbeshears1

I understand the difficulty all around. They can’t prove antibiotics cause PN or hurt those who already have PN; on the flip side, there’s no proof antibiotics DON’T hurt those with PN. And it’s not a major research interest. When I ask about it when I’ve been prescribed by dentist, eye doctor, and even my PCP, I get a confused look. I asked my Neurologist 2 weeks ago and got a “I don’t know” as I got in reply to several other questions I had for him. Bottom line is that those of us affected are all searching for cause and effects that help us or hurt us so we can adjust accordingly, whether we think it’s antibiotics, vaccines, coffee, or sugar etc. I have felt setbacks weeks after taking antibiotics and wish they could help us make more informed decisions. So for now, if I need an antibiotic, I stop taking them after a few days if I’m feeling better or if my legs feel weaker, whatever comes first. I won’t finish the prescription because I have to make a choice between the potential injuries of the decision. Luckily, I have had a couple of doctors say it’s not always terrible to stop them as it was once believed.

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Your comment - not a major research interest. Bingo!! And, I doubt the medical community would have any interest in knowing if antibiotics would likely cause PN. Their job is to fix the problems of infection at hand. Let's face it, there are many side effects of many medications. Perhaps PN has not yet been discovered involving antibiotics. Or has it?

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@johnbishop

Hi Debbie @dbeshears1, Thanks for starting this discussion. It's a great question to ask if you have neuropathy. I certainly would hope my doctor knew since they know that I have neuropathy. Here are a few references but I'm sure there are others.

-- Association Between Peripheral Neuropathy and Exposure to Oral Fluoroquinolone or Amoxicillin-Clavulanate Therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6583699/
-- Antibiotic-induced neuropathy: https://www.medlink.com/articles/antibiotic-induced-neuropathy
-- Common antibiotic may increase nerve damage and peripheral neuropathy risk: https://neurosciencenews.com/antibiotics-nerve-damage-13083/

Jump to this post

Thanks so much for the link. I've had pn for over two years. I recently was prescribed amoxicillin-clavulanate for a respiratory/sinus infection.
Amoxicillin-clavulanate was addressed in the first link. While I didn't identify any worsening of my pn symptoms, it was reassuring to know this particular drug was not found to cause pn. Good information to have going forward.

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