Fluoroquinolone toxicity
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
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.
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.
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.
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.
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😢
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🙏
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😢🫶
@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.
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