Neuropathy after taking antibiotics and other prescription medications

Posted by Lacy @lacy2, Feb 28 3:30pm

Quote from Internet: Nitrofurantoin-associated peripheral neuropathy is rare & has been reported in both cystitis tx and prophylaxis settings.
Majority of cases are reported in patients receiving therapy for longer than 5 days (recommended duration for cystitis txIDSA)

It's rare, as most other drugs, but "someone" got it!!

I got peripheral neuropathy 2016 and still have it of course from taking a Quinolone drug , Norflox , in Canada for a simple urine infection … the sample of which was not even sent to a Lab for analysis, just the Dr's urine dip strip!
But since then have been often given other antibiotics etc. for UIT bladder infections as have no other choice??.

Just wondering how many of us, or population, have neuropathy which has been causes by prescription medications for something unrelated to neuropathy?? Like me, it can be permanent and also, like me, they still give me drugs that can do more damage to our bodies. Again, what choice do we have?

I have had several UIT's since 2016 and now am awaiting diagnosis of "internal tremors" which on top of all the man other things I have, is making me quite ill… but what choice did I have than to take meds with an infection?

Also my tinnitus: why is it worse…. reading back on some meds I took, yes, can cause it. I am appreciative of the benefits of medications but they sure can do some bad things to our bodies, especially with doctors who can't be bothered or have time to read our medical history, or pharmacist who says.. oh that list of side effects is just for the manufacturer's insurance. you will be OK. Well, I'm not OK.

(I was on Zoloft for over 15 years.. no one told me it could cause narrow angle Glaucoma….it could, and it did, and I have it. Do I sound bitter, well yes, as they dish these pills out like candy and do NOT keep checking with patient to find out how meds are affecting them…. and I understand, they are too busy and I realized TOO LATE that now "I" have to do the checking. Sad.

https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/other-drugs/ I see at least two I took on their extra page listing the drugs and what they are prescribed for and honestly hope not upsetting anyone who uses them….also my spouse (we have both survived cancer) is also currently taking some and yes does have neuropathy…. talking to our adult daughters, they had no idea about side effects and just take what a doctor gives them, but now we go to walkin clinics, do tele-health visits with unknown ds.over the phone etc. — since doctor shortage and Covid, and the short appointments time, a doctor we have never seen before, a doctor who does not have our "history" or patient file, and sometimes we even forget to tell them our history with some illnesses or prior reaction to drugs…. I feel we have to be really on the ball and take along, or discuss, previous drug reactions and our list of illnesses over the years for them to read before giving us – a new patient to them – a prescription drug that may cause a lot of problems. Kudos to doctors, dentists and optometrists for working through this Pandemic but they can not only not read our minds, but it is so important to take the time to advise them of our full "history" so they can make the best choice prescribing or using a medication that has a chance, even slight, of worsening our current condition….wish I had taken such time. J.

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Thank you for posting this. I believe my neuropathy symptoms, which continue to get worse…leg numbness, pain, tingling, etc., are caused by Tacrolimus one of the anti rejection meds I’m on. I’ve found a couple medical journal articles correlating it as a cause of neuropathy. My liver doctors say it may be the cause and my prescription was reduced 1 mg to 7 mg/day (it’s extremely powerful). I’m seeing a neurologist later this month. Tacrolimus was not on the list by the Fdn. for PN. I don’t want to switch meds yet as there are only a couple available for us and they all come with side effects. I’m only 6 months post-transplant, so have many years ahead on these drugs.

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Thanks for starting this discussion Lacy @lacy2. The information on the Foundation for Peripheral Neuropathy website (https://www.foundationforpn.org/) is really helpful for learning about PN. Another good site is Neuropathy Commons (https://neuropathycommons.org/).

It really does pay to be your own health advocate and learn as much as you can about your condition and available treatments. Then have those conversations with your doctor so that you are heavily involved with the treatment. I have small fiber peripheral neuropathy and have had it for well over 20 years. Fortunately for me I don't have the pain just the numbness. I too have taken 1 of the drugs for a short period of gout and 1 for high blood pressure for a few years until they changed the medication after I was in a heart research study at Mayo Clinic and my diagnosis changed to Primary Aldosteronism. So I did think there was a possibility that my neuropathy was caused by years of taking vaseretic. I really don't blame the doctors since one condition can be life threatening and the other is the lesser of the two evils. That and each of us are different so what may be a side effect for one doesn't affect someone else the same. I think that's why it pays to learn as much as you can about your health and be involved in treatment decisions with your doctor or health care team.

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I have neuropathy pretty badly from Dilantin. Does anyone no a replacement drug for dilantin. I have a seizure disorder and cannot afford to screw up.

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@straightway22

I have neuropathy pretty badly from Dilantin. Does anyone no a replacement drug for dilantin. I have a seizure disorder and cannot afford to screw up.

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@straightway22, I deleted your email address to protect your privacy since Connect is a public forum and allow spammers to harvest your email address to add to email lists to sell. Members can send each other private messages that are secure and exchange contact information.

How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

@jakedduck1 may be able to share his experience and offer some suggestions for you.

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Got a surprise this evening. Had the "neuropathy" since 2016 and coping with it until a few months ago and I dont know if it is that which is getting worse or have something else as often through the week am getting, as I did this afternoon, sudden internal tremors or shaking or ? for houses, also like a heart beating in my spine, colon, arms, legs, and have been waiting to do a teleconference with a neurologist I saw years ago, but he is out of town and his office closed to covid…so its in 2 weeks.
TONIGHT had a sudden idea what is bringing on these hour or 2 or 3 of internal shaking that isn't painful but horrible on top of everything else, plus arms and legs have gone from tingling to painful and wooden like.. anyway, not explaining this very well: but I have had a tooth out and I have a sore tooth and last week realized it MIGHT be from the numbing agent.. Lidocaine and Epipherine… so extraction is on hold til I ask nurologist HOWEVER, I have also been using various over the counter COUGH AND SORE THROAT DROPS over the months as mouth sore from dental work.

Tonight for some reason I suddenly wondered if the LOZENGES I used today have side effects: THEY DO. I cannot believe it… I have used various types of lozenges on and off for years and more so recently, but perhaps now with neuropathy or ? am now getting a side effect and I could not believe some of the rare side effects even says check use with doctor or pharmacist if pregnant or breastfeeding: a cough drop??? if you check web site CEPACOL LOZENGES, or STREPSILS LOZENGES, or even DEQUADINS although Dequadins doesn't show as much.
I am in Canada so not sure if same brand in USA.. but I am surprised I was so naive to think they were almost like candy! Cepacol says on package honey and lemon antibacterial action (action?) and that its an Antiseptic throat lozenze…. my bad, I never read the wording on the box they are sold in.
*Even if someone does not have Neuropathy, if use for sore throat etc. may I suggest you read the warning on internet. … whew!!!! J. p.s. Is there a group which may talk about side effects of OTC meds, I can put on there too if you think would help anyone.

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@lacy2

Got a surprise this evening. Had the "neuropathy" since 2016 and coping with it until a few months ago and I dont know if it is that which is getting worse or have something else as often through the week am getting, as I did this afternoon, sudden internal tremors or shaking or ? for houses, also like a heart beating in my spine, colon, arms, legs, and have been waiting to do a teleconference with a neurologist I saw years ago, but he is out of town and his office closed to covid…so its in 2 weeks.
TONIGHT had a sudden idea what is bringing on these hour or 2 or 3 of internal shaking that isn't painful but horrible on top of everything else, plus arms and legs have gone from tingling to painful and wooden like.. anyway, not explaining this very well: but I have had a tooth out and I have a sore tooth and last week realized it MIGHT be from the numbing agent.. Lidocaine and Epipherine… so extraction is on hold til I ask nurologist HOWEVER, I have also been using various over the counter COUGH AND SORE THROAT DROPS over the months as mouth sore from dental work.

Tonight for some reason I suddenly wondered if the LOZENGES I used today have side effects: THEY DO. I cannot believe it… I have used various types of lozenges on and off for years and more so recently, but perhaps now with neuropathy or ? am now getting a side effect and I could not believe some of the rare side effects even says check use with doctor or pharmacist if pregnant or breastfeeding: a cough drop??? if you check web site CEPACOL LOZENGES, or STREPSILS LOZENGES, or even DEQUADINS although Dequadins doesn't show as much.
I am in Canada so not sure if same brand in USA.. but I am surprised I was so naive to think they were almost like candy! Cepacol says on package honey and lemon antibacterial action (action?) and that its an Antiseptic throat lozenze…. my bad, I never read the wording on the box they are sold in.
*Even if someone does not have Neuropathy, if use for sore throat etc. may I suggest you read the warning on internet. … whew!!!! J. p.s. Is there a group which may talk about side effects of OTC meds, I can put on there too if you think would help anyone.

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Thank you for info on throat lozenges. Try plane old peppermint candy canes or honey. I am diabetic so I know you may have to be careful with sugar intake. I don’t know how to say this but I wish you healing.

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I wanted to share this article on the use of honey for a cough/sore throat remedy.

-Honey: An effective cough remedy?
https://www.mayoclinic.org/symptoms/cough/expert-answers/honey/faq-20058031
I have been making my family a homemade tea, like the article mentions, with raw honey for years whenever there is a cough or sore throat and I swear by it to the point that we no longer buy any lozenges or cough drops/medicine.

I use:
8 oz. hot water
1 heaping TBSP raw honey – mix honey and water together first
1/4 squeezed lemon – then drop the lemon in the tea
4 dashes of cinnamon – stir and serve

Nothing fancy but it tastes good, is soothing and natural. I've also been known to drop it off at the doorstep of my sick friends. 🙂

Will you let me know if you happen to try it?

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I was just looking at a couple of comments I made a while ago and having had a lot of issues since and lately was reminded of how this all started in 2016 after my dr gave me a quinolone drug for uti which was not even confirmed by a lab, the uti that is. So now 2021 and they are still prescribing these drugs in Canada… thought I would just search internet to find latest info. And came across:

Some Antibiotics Linked to Serious Nerve Damage
By Kelli Miller
Reviewed by Arefa Cassoobhoy, MD, MPH on August 27, 2013
FROM THE WEBMD ARCHIVES
Aug. 27, 2013 — The FDA is strengthening its warning that a popular class of antibiotics, called fluoroquinolones, may cause sudden, serious, and potentially permanent nerve damage called peripheral neuropathy]

Is it just me or is the point being lost that these drugs can and have caused permanent nerve damage, as happened to me and to millions. It seems over the years they have only been wanting the drug companies to make the WARNING larger: I dont care if the Warning is written six inches by six inches …where is the warning written; who makes sure the patient is shown the warning; if given pills in hospital by a nurse as a patient, you are not given a sheet with a description of the drugs with a warning on!
Just one fast internet search 2 minutes ago and its even from 2013 and they are STILL ruining lives. Yes, if a choice between life and death and taking a drug that might or does cause P.N… but for a nondescript uti etc….. I am so fed up and angry … not only for myself but for all those who have been affected and maybe didnt even connect their PN with medication they took up to months before.. mine was 2 weeks after last pill…. how many people have been given another reason for their PN but it was medication, medication that has to have such a WARNING on…. I was never told by Dr., by pharmacist but I have to admit I did not know what a black box warning was and every time got meds pharmacist would say oh those lists of side effects are just for insurance purposes, its OK to take them. Was not OK. Cant go back in time but seems the more things change, the more they stay the same. Poor us !!!!

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@lacy2

I was just looking at a couple of comments I made a while ago and having had a lot of issues since and lately was reminded of how this all started in 2016 after my dr gave me a quinolone drug for uti which was not even confirmed by a lab, the uti that is. So now 2021 and they are still prescribing these drugs in Canada… thought I would just search internet to find latest info. And came across:

Some Antibiotics Linked to Serious Nerve Damage
By Kelli Miller
Reviewed by Arefa Cassoobhoy, MD, MPH on August 27, 2013
FROM THE WEBMD ARCHIVES
Aug. 27, 2013 — The FDA is strengthening its warning that a popular class of antibiotics, called fluoroquinolones, may cause sudden, serious, and potentially permanent nerve damage called peripheral neuropathy]

Is it just me or is the point being lost that these drugs can and have caused permanent nerve damage, as happened to me and to millions. It seems over the years they have only been wanting the drug companies to make the WARNING larger: I dont care if the Warning is written six inches by six inches …where is the warning written; who makes sure the patient is shown the warning; if given pills in hospital by a nurse as a patient, you are not given a sheet with a description of the drugs with a warning on!
Just one fast internet search 2 minutes ago and its even from 2013 and they are STILL ruining lives. Yes, if a choice between life and death and taking a drug that might or does cause P.N… but for a nondescript uti etc….. I am so fed up and angry … not only for myself but for all those who have been affected and maybe didnt even connect their PN with medication they took up to months before.. mine was 2 weeks after last pill…. how many people have been given another reason for their PN but it was medication, medication that has to have such a WARNING on…. I was never told by Dr., by pharmacist but I have to admit I did not know what a black box warning was and every time got meds pharmacist would say oh those lists of side effects are just for insurance purposes, its OK to take them. Was not OK. Cant go back in time but seems the more things change, the more they stay the same. Poor us !!!!

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In reply to @lacy2 I am sorry to hear about your situation which is quite similar to mine. I was working for United Nations and was based in Zimbabwe, Harare in 2017. I had UTI, for which a UN doctor prescribed me Cipro in June 2017 and within days the soles of my feet started behaving differently as if they were not my feet. I started experiencing burning sensation with increase in severity each day. After waiting and struggling for a month I visited Malaysia in an attempt to access comparatively good medical facility where a neurologist on the basis of MRI report told me that the pain and burning sensation in my feet was the result of a pinched nerve caused by spinal stenosis at my lumbar region triggered by degenerative disc disease. He prescribed tylenol and recommended exercises and physical therapy. He also told me that surgery could be the last resort with no guarantee to fix the problem. Thereafter I did a lot of research at my own including the possibility of stem cell therapy to avoid surgical intervention which took me to a clinic in Colorado which reviewed my reports and suggested Platelets lysat injections but to no avail. Thereafter I consulted Mayo Clinic who ordered a fresh MRI, a lot of blood work and other tests and concluded that I had small fiber neuropathy with no definite cause. This was in June 2018. Since then I have been using some supplements but am still not sure how effective they are. Although my burning sensation has subsided somewhat I now have a lot of numbness which is increasing every day. My own conclusion is that while I do have mild lumbar stenosis,
Cipro is the culprit for my debilitating condition and retirement from the UN. Since June 2018 I have not used any prescribed medication including painkillers of any kind. I don't trust the medical community. It is as simple as that.
Sorry for the lengthy post.

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@nukhan

In reply to @lacy2 I am sorry to hear about your situation which is quite similar to mine. I was working for United Nations and was based in Zimbabwe, Harare in 2017. I had UTI, for which a UN doctor prescribed me Cipro in June 2017 and within days the soles of my feet started behaving differently as if they were not my feet. I started experiencing burning sensation with increase in severity each day. After waiting and struggling for a month I visited Malaysia in an attempt to access comparatively good medical facility where a neurologist on the basis of MRI report told me that the pain and burning sensation in my feet was the result of a pinched nerve caused by spinal stenosis at my lumbar region triggered by degenerative disc disease. He prescribed tylenol and recommended exercises and physical therapy. He also told me that surgery could be the last resort with no guarantee to fix the problem. Thereafter I did a lot of research at my own including the possibility of stem cell therapy to avoid surgical intervention which took me to a clinic in Colorado which reviewed my reports and suggested Platelets lysat injections but to no avail. Thereafter I consulted Mayo Clinic who ordered a fresh MRI, a lot of blood work and other tests and concluded that I had small fiber neuropathy with no definite cause. This was in June 2018. Since then I have been using some supplements but am still not sure how effective they are. Although my burning sensation has subsided somewhat I now have a lot of numbness which is increasing every day. My own conclusion is that while I do have mild lumbar stenosis,
Cipro is the culprit for my debilitating condition and retirement from the UN. Since June 2018 I have not used any prescribed medication including painkillers of any kind. I don't trust the medical community. It is as simple as that.
Sorry for the lengthy post.

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I would bet on Cipro being the cause, i will never forget that morning walking across carpet and feeling every single fibre on my bare feet and then making breakfast and hands tingling… Quinolone drug side effects are all over the Internet and have been for years yet they still prescribed them…i just dont understand it.. and one thing led to another and even tricky to type some days and now a whole bunch more problems and I wonder if Norflox did this tomy arms and legs, what did it do to my insides? I just gave away book I read called Bitter Pills.. its all in there, author's wife after ONE pill, and then talking about the FDA and big pharma. Sad.

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