Fluoroquinolone toxicity

Posted by cbsolomon @cbsolomon, Sep 11, 2021

Did anyone on this forum take cipro levaquin or avelox around the time their neuropathy began. If so, you probably suffered an adverse reaction to the drug. These fluoroquinolone antibiotics are well know for causing bad neuropathies, tendon damage and psychiatric issues. Check your medical records.

Interested in more discussions like this? Go to the Neuropathy Support Group.

What kind of Psych issues? Thanks

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@lakeside1999

What is the name of the doctor who helped your son? I live in NE Pennsylvania, and I'm desperate to get some help. Seven years since getting floxed and having a terrible flare up of tendon pain.

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I was searching "Doctors who treat FQAD" online and I saw many there. Most of them work with muscles but not with hypoglycemia which I have. Search online and you will find one doctor who can help you. I think I got mitochondrial disorder after Cipro drug. I have only one pathological gene for MCADD but I experience severe hypoglycemia and chest pain from palpitations at night. Now I also have high blood sugar probably due to liver or pancreas dysfunction.

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New to the group. To be honest I’ve stayed away from these sites mostly for my mental health.
In June of 2017 I was poisoned with Cipro; was extremely sick for 7 months. Couldn’t find a doctor that believed Cipro was responsible even given the fact I was on my last dose when the issues began. And the symptoms were text book. Painful knees, painful lower back, feet and especially toes were on fire, ligament issue in one of my knees. I was literally told to leave an Immediate Care Center.
So I did my research and basically treated myself. It took large doses of transdermal Magnesium, around 700mg daily. I knew my body was starved and in need more because I would get body spasms. Once I took the right amount the body the spasms would end. I had issue with my eye sight joint pain in my knees and wrist. I would spray the magnesium and it would have an immediate effect. I kept detailed notes to what I took and how much. My wife thought I was losing my mind. She believes me now.
I finally found doctors at the VA that believed me, but had zero recommendations. So I continued my treatment. My D3 was low so I took large amounts and used a local lab to monitor my levels. Finally got the D3 stable.
Long story short. Today I still have Neuropathy in both feet but my feet feel normal unless I drink alcohol or eat anything with more than 8g of sugar. Which I never do. I have by accident and my feet can hurt from days to weeks.
I never ever take NSAIDS. I’ve had two surgeries and the anesthesia did not bother me. I took Tylenol Arthritis for pain without issue. So it’s my go to pain for pill. I used until this week large doses of Tumeric for an anti inflammatory. But my bilirubin has increased so I’ve stopped that. I took it for a bad neck and back. Worked great. I’m sure it helped with the Cipro issue too.
Drugs I’ve taken
Amoxicillin without issue
Doxy caused minor symptoms. Won’t take.
Lomotil. Cause minor issues for about 3 days.
Never take steroids.
Pneumococcal 13 ? And it caused major pain in my feet for about a month.
I take vitamins D3, C, probiotics, and transdermal magnesium 200mg daily.
Fish oil.
I never take Vitamin B as it seems to aggravate my neuropathy.
I credit the transdermal magnesium for getting to where I am. I would say I’m at 95% pre being floxed.
One of the good side effects. Because I can’t eat sugar my cholesterol and triglycerides are unbelievably good for a 62 year old.
I recommend to people something someone else posted once on another site. Figure out a good course of action, do it and stay off the sites until you’ve grasped mentally what’s happened. Some day I would actually like to see a doctor that works with Cipro toxicity patients, but haven’t found one yet. Here in KY there’s no one as far as I know.
I would really like to find an anti inflammatory that I can take, but it might be a bridge too far. If anyone has taken anything that’s been effective let me know.
Best of luck.

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On 5/26/23 I was put on a regime of 10500 mg of Ciprofloxacin, I was 59 years old, had NO infection (charted as such), was taking NSAIDS . Within three months the same medical group gave me five Prednisolone injections. I suffer from severe Peripheral Neuropathy in my hands and feet. I developed carpal tunnel syndrome within 12 hours of first dose. Tendonitis (everywhere) and frayed Achilles Tendon. Mental confusion, brain fog, memory lapse. Overall, lack of energy. I was in the middle of applying for disability due to lifelong orthopedic issues/surgeries etc.. So, I did not connect the Cipro usage and my symptoms immediately having already been a pain patient for a few years. However, when symptoms increased 10x in a relatively short period of time, I began searching for answers, and shortly discovered the connection, but not until I had finished the full course, and been injected with steroids. The Neuropathy has subsided a little. The tendonitis has stayed about the same, and I have developed "brain fog" i.e. mental confusion, memory loss. etc.

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Sorry you have experienced such side effects. I avoid all fluoroquinolone antibiotics (Levaquin, Cipro, Avelox, numerous others) because I experienced a tendon injury after every time I took it. Big pharma and drs say the threat is only while you are taking it, but many patients disagree, particularly about how long the threat of injury lasts beyond finishing the prescribed dose. There was/is a massive class action suit by people who took Levaquin. And July 26, 2016, the FDA issued a news release updating warnings, including tendon and nerve injuries. Go to fda.gov
and either search by that date or fluoroquinolone. The press release lists all the ones in that family. I keep a list with me whenever I visit a dr. and make sure fluoroquinolones are listed as an allergy in my medical histories. There are lots of alternatives that can be prescribed. In the past, I was told, ortho surgeons believed (probably still do?) that Cipro did the best job of protecting against infections after joint/bone surgeries.

A related topic of research is how long drugs stay in a particular person's system. After disastrous experiences with anesthesia (couldn't wake up; constant vomiting even while still unconscious) following my first two knee operations, I insisted on meeting with the anesthesiologist before the next one. She gave me only a tiny dose of propofol and kept me overnight and monitored how long that and the pain meds stayed in my system. She said the meds she monitored were gone from most people's bodies after about 90 minutes. I still showed traces after 19 HOURS!!!! So it is worthwhile researching one's particular system and tolerance when considering an appropriate dose.

I hope your symptoms have subsided. Good luck.

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@johnbishop

Hello @cbsolomon, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Here's a little research in case others want to know more about the topic of fluoroquinolone antibiotics, toxicity and the connection to neuropathies and other adverse side effects.

"Fluoroquinolones are broad-spectrum antibiotics, including the most widely used of these which are ciprofloxacin, levofloxacin and moxifloxacin. The most serious reactions caused by this class of medication include toxicities of the central nervous system, cardiovascular system, and the musculoskeletal system." --- Fluoroquinolone toxicity symptoms in a patient presenting with low back pain: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3981197/

FDA updates warnings for fluoroquinolone antibiotics on risks of mental health and low blood sugar adverse reactions: https://www.fda.gov/news-events/press-announcements/fda-updates-warnings-fluoroquinolone-antibiotics-risks-mental-health-and-low-blood-sugar-adverse

Have you been diagnosed with neuropathy as a result of fluoroquinolone toxicity?

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Hi.

This is so much more than torn ligaments and archillies. This is the breakdown of muscles - the wasting of bodies. I've been wasting away for around 20 months. I'm in the uk and was given Ciprofloxacin to go home with after a seven day admission to hospital for food poisoning and kidney infection. My life has been hell ever since - it's affected me psychologically, neurologically (not been able to eat hardly for 20 months and spent most of the 20 months at 7st. I'm now 7st 3 and cannot gain weight. My muscles are melting away (I did ballet for 20 years, weight training, yoga, kick boxing) my vision is deteriorating, I'm getting pain and weakness now in knees, ankles, and have chronic neck pain. I have waves of nausea everyday and tachycardia which has resulted in my dad getting an ambulance in 2023, I have abnormal heart rhythm, and severe anxiety. All this time I have run my two medical clinics whilst trying to put on a front (but still looking like a skeleton) and nearly collapsing because I need the money. It causes a huge overdrive of metabolism because of mitochondria damage, with the most frequent symptom of muscle wasting. This is happening to most floxxwd people. THATS why it causes torn ligaments etc - yet in the medical literature, they never mention severe muscle wasting and severe weight loss. I have hyperbolic ED too - I should never have been given it! It was a three day course. One tablet can damage you. My grandad (who is not alive now) took one Cipro pill. My grandma, upon hearing us talking about what Cipro has done to me, told us that my grandad was given them - he took one and went bright red with a rash all over his body from head to toe and a doctor had to rush round to give him an antidote. The day after my grandma broke her hip and spent two weeks in hospital. When she returned she was shocked to see that he had alot of muscle wasting and weight loss and he was never the same after that. He had COPD mild at that point. After the Cipro, his breathing went worse, and health in general.
I'm suffering headaches and eye pain right now and have only found out last week about the Cipro/fluoroquinalones toxicity. All my doctors can't help me. They think I have ARFID - and so did I...until I found out about Cipro. I have now booked an appointment with another doctor and will be taking my evidence with me. They have neglected me for 20 months - why did they not think it may be a medication I was given after I left hospital-it isn't rocket science to check, is it! None of them know about Fluoroquinalones and hospitals and GP's are giving this horrific class of antibiotics to anyone and ignoring the black box warnings. I'm devastated...I'm exhausted, breathless, in pain, wasting away...we are being left to die. I have to force huel shakes in all day and bread, and potato's, and crisps just to keep some weight on but it's coming off constantly. There is an intense hunger feeling, it's awful. It's causing hypermetabolism. How do I get my doctors here in the UK to believe me and take me seriously. My doctors are Kenmore medical practice in Wilmslow, Cheshire, UK - if you could send them some info on Cipro and the damage they cause, it would be most appreciated. 🙏x😢

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@xerky1024

I just spent an hour writing about my 3 1/2 year experience nightmare of Levaquin. From perfectly healthy to the extreme fit physically fit high-level professional medical speech, pathologist for 30 years, working seven days happily balanced life, married with dogs. After trying to get rid of a UTI. I was given Levaquin after day for my life ended. Neuropathy following mental changes visual changes, and all the symptoms of Sjogren’s suddenly came on I also experienced severe anhidrosis. I do not sweat. I stop driving I stopped working I stopped living I do not even go out. My wife has taken care of me for the last 3 1/2 years since this happened I had to quit my fantastic profession, which I enjoyed so much. Our life ended. After seeing several doctors and 3 1/2 years worth of searching. Mostly ignored and neglected, and frankly did not believe me. Put me in the mental category started me on antidepressant antipsychotic drugs. It destroyed my life Basically bedbound. I wrote all the details I could think of and it never excepted my comment. It’s just circled.

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I'm in the UK..was given Ciprofloxacin in June 2023 - a course for three days...my life has changed completely...I'm wasting away, cannot put weight on, muscle melting away, chronic neck pain, tachycardia, heart issues, breathlessness, and now I feel exhausted all the time. I've not been able to eat - it's psychological...it comes and goes but I have to force multiple Huel shakes down everyday plus soup, bread, curry, naan bread, crisps, all day - just to keep the weight on but it's so hard to eat as I can only eat a small amount - the muscle and weight is dropping off constantly. My knees and ankles have started hurting. How can we get help, 😢

I'm so sorry this is happening to you - sending you so much healing positivity. X🙏

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@xerky1024

This is from the same writer of the last comment. The details are as follows. After day four of Levaquin, an attempt to heal UTI. I had a Immediate Neuropathy in my feet and my hands. My mental status changed drastically. I could no longer focus at work. I could not remember all the things that were hardwired in my mind, I could not use a computer and I could not treat patients as I had for the last 30 years. I had seen a spectrum of physicians as had many contacts. Other than the obvious neuropathy. My other complaints were ignored. Inability to sweat, lizard type skin I was talked down to and neglected when I told them the massive number of cognitive changes that it happened. I did cognitive testing for my entire career of over 30 years. My executive functioning skills quickly went down with motor apraxia and ideational apraxia all kinds of mental symptoms. The extreme weakness from being a half marathoner, to barely being able to walk slowly due to the tendon, soreness and tightness in my whole body. When the allopathic physicians could not figure out what was going on. They threw me in the mental category. Suggested that I went to a behavioral facility where things went extremely bad. My weakness and pain from previous UTI returned severely, and at one point I actually attempted suicide. They sent me to a lockdown facility at that time which was very nasty and did not assist me in anyway. I was put on very destructive anti-depressant antipsychotic drugs and benzos to assist in sleep, which was totally destroyed since the Levaquin became a total insomniac. Sometimes could not sleep for a week at a time not even for an hour. Again, all the symptoms were so extreme and so severe. I’ve only worsened to this day. Stopped driving vision from being good is now severely impaired. It is affecting my entire body function. I have many central nervous system problems as I no longer have a reflexive cough or reflexive sneeze. multiple auto immune type symptoms. Only the naturopathic doctor seems to have a clue. I have tried multiple supplements with minimal results. The muscle wasting is phenomenal and I have gone from solid rock to pure cellulite and do not engage in normal community life functions anymore. Tried strengthening exercises, and things just got worse. I could pound out several bar dips or pull ups. Now I can do none. This seems to be like a progressive neuro physiological issue. I can’t coordinate shaving or simple ADLs. I just go from the bed to the bathroom to the kitchen and stare at the ceiling. I was the most active stable person and a high functioning individual you will ever find. Highly engaged in world events, news politics, everything. Also, an avid bowler . It all ended after Levaquin. The allopathic doctors just deflect deny or can’t understand it. It has really made me want to scream. As people just do not believe how so many resulting symptoms can happen. But with mitochondria depletion, I would think nothing is off the table as in my case. But nobody can seem to put their finger on exactly what it is. But my total body dryness and lack of saliva, it is very similar to Sjogren’s syndrome symptoms. Was 60 years old going on 40 with zero health or mental issues. After day four of Levaquin it is phenomenal what happened to me. My wife has done everything for me since that time. I am essentially bedbound and ignore the world around me. Have not gone to a store or a bank or interacted other than a few doctors appointments which I was dragged to as I have become extremely socially impaired. The anhidrosis almost entire body unable to sweat affects everything. I do have bad psych issues now. But it all stems from the onset after the Levaquin. If there is anyone out there who has suggestions for one that is 3 1/2 years post onset please let me know.

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I'm so sorry...I'm 45 and going through hell too since finding out last week (my mum found an article) that I have Fluoroquinalone toxicity due to Ciprofloxacin, 3 day course. 20 months of hell so far, wasting away, can't eat properly so can only get a few calories in and having to force Huel down multiple times a day - anxiety...neurological, psychological, heart issues, breathing issues, now getting g exhausted and have pain in eyes, neck and knees and ankles - everything feels like exhaustion. I'm so sorry ...I really am...none of us deserve this...it's utterly heartbreaking. I have been going to doctors for 20 months and none of them have a clue - now that I've found the answer, I have an appointment booked for the 13th Feb. I'm absolutely livid - it is their job to find out about medication warnings! How dare they do this to us. I want to get as many people together in the UK and take Bayer to court. X😢🫶

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@anniecherry79

Hi.

This is so much more than torn ligaments and archillies. This is the breakdown of muscles - the wasting of bodies. I've been wasting away for around 20 months. I'm in the uk and was given Ciprofloxacin to go home with after a seven day admission to hospital for food poisoning and kidney infection. My life has been hell ever since - it's affected me psychologically, neurologically (not been able to eat hardly for 20 months and spent most of the 20 months at 7st. I'm now 7st 3 and cannot gain weight. My muscles are melting away (I did ballet for 20 years, weight training, yoga, kick boxing) my vision is deteriorating, I'm getting pain and weakness now in knees, ankles, and have chronic neck pain. I have waves of nausea everyday and tachycardia which has resulted in my dad getting an ambulance in 2023, I have abnormal heart rhythm, and severe anxiety. All this time I have run my two medical clinics whilst trying to put on a front (but still looking like a skeleton) and nearly collapsing because I need the money. It causes a huge overdrive of metabolism because of mitochondria damage, with the most frequent symptom of muscle wasting. This is happening to most floxxwd people. THATS why it causes torn ligaments etc - yet in the medical literature, they never mention severe muscle wasting and severe weight loss. I have hyperbolic ED too - I should never have been given it! It was a three day course. One tablet can damage you. My grandad (who is not alive now) took one Cipro pill. My grandma, upon hearing us talking about what Cipro has done to me, told us that my grandad was given them - he took one and went bright red with a rash all over his body from head to toe and a doctor had to rush round to give him an antidote. The day after my grandma broke her hip and spent two weeks in hospital. When she returned she was shocked to see that he had alot of muscle wasting and weight loss and he was never the same after that. He had COPD mild at that point. After the Cipro, his breathing went worse, and health in general.
I'm suffering headaches and eye pain right now and have only found out last week about the Cipro/fluoroquinalones toxicity. All my doctors can't help me. They think I have ARFID - and so did I...until I found out about Cipro. I have now booked an appointment with another doctor and will be taking my evidence with me. They have neglected me for 20 months - why did they not think it may be a medication I was given after I left hospital-it isn't rocket science to check, is it! None of them know about Fluoroquinalones and hospitals and GP's are giving this horrific class of antibiotics to anyone and ignoring the black box warnings. I'm devastated...I'm exhausted, breathless, in pain, wasting away...we are being left to die. I have to force huel shakes in all day and bread, and potato's, and crisps just to keep some weight on but it's coming off constantly. There is an intense hunger feeling, it's awful. It's causing hypermetabolism. How do I get my doctors here in the UK to believe me and take me seriously. My doctors are Kenmore medical practice in Wilmslow, Cheshire, UK - if you could send them some info on Cipro and the damage they cause, it would be most appreciated. 🙏x😢

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@anniecherry79, You might want to try and find some clinical study research on Fluoroquinolones and discuss it with your doctors. I posted a few earlier in this discussion here - https://connect.mayoclinic.org/comment/634676/. Google Scholar is a good search tool for finding medical research information. Here's the search results when search for "fluoroquinolone toxicity +tendon damage" - https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=fluoroquinolone+toxicity+%2Btendon+damage&btnG=

Hopefully your doctors will listen to your concerns.

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Just a comment regarding antibiotics in particular Avelox, Cipro and other related strong antibiotics. When taking these meds, try to be with someone in case you have an allergic reaction which is what happened to me when I was prescribed Avelox. Within 2 minutes I had a full blown out reaction. Could hardly breath. My wife carries a copy of my meds list and rushed me to a nearby urgent care and was given something to counter the drug. The doctor asked what I took and did not have time to get any info about me, it was an emergency. Our hospital is 11 miles away and was too far, could not wait for ambulance. A reaction may not happen the first time taking an antibiotic, it could happen afterwards. So, having someone nearby for a possible reaction to an antibiotic is essential. Ed

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