Her doctor listened to her list of symptoms and wrote a prescription for Ciprofloxacin. It’s a potent and commonly prescribed antibiotic. It belongs to the fluoroquinolones family of antibiotics that also includes familiar names like Levaquin (levofloxacin) and Avelox (moxifloxacin). They are most often prescribed for urinary tract infections or respiratory infections.“The prescription was for five 1000 mg pills. You should have seen the size of the pills. They were huge,” says Susan.
The trip down went just fine and the infection cleared up. However, within about 10 days after the prescription was done and she was back home, she began to experience some peculiar symptoms. “It started with a tingling and itching in the arches of my feet. I felt like I was in a brain fog, just kind of feeling stupid and not normal. And then I started feeling like I was being bitten by spiders. I would just rip my pants off because I thought I was being bitten.”
“I had no idea I was having a reaction to the Cipro. And then things just went full-on crazy,” she says.
“I had prickles, I could feel the muscles twitching in my legs, and I couldn’t breathe. My ankles and wrists were burning.“I had wringing ears, I had diarrhea for about six months,” she adds.
The symptoms the young mom describes are the kind of adverse reactions reported by thousands of people after taking Cipro, Levaquin and/or Avelox. These are considered to be among the most powerful antibiotics currently available.
According to a study, to be published in the September 15, 2014 edition of the American Academy of Neurology (Neurology 2014; 83:1-3), the risk of peripheral neuropathy (tingling, buzzing, prickly sensations in the extremities) is significantly elevated with the use of oral fluoroquinolones.
“What we can say is that it is doubles the risk. Generally speaking, this is still a rare event, but in terms of the relative risk, it doubles the risk between users and non-users,” says the study’s lead author Dr. Mahyar Etminan, PharmD, from the University of British Columbia, Canada.
It took months for Susan to begin to understand that her symptoms were consistent with an adverse reaction to Ciprofloxacin.
“I should have gone to the hospital,” she says, “but I went back to the doctor and told her what was happening.”
Eventually, Susan turned to the Internet and began to make the connection. She found there were lots of other people out there with similar stories. They call themselves “floxies” - and refer to their reactions as “being floxed.”
READ MORE CIPRO TENDON RUPTURE LEGAL NEWS
In 2008, the FDA began requiring manufacturers to apply a black box warning label to fluoroquinolones alerting patients to the risk of tendon damage and rupture.
Unfortunately, for the young mother, her life has changed dramatically since last February and that prescription for Cipro. She has been unable to work, often spends days in bed and struggles to cope with daily life. She’s been in touch with a lawyer and is in the process of considering her legal options.
Cipro is manufactured by Bayer Pharmaceuticals.
READER COMMENTS
Patti
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I was having numbness and tingling all over my body the worse is when I get it in my head. It has gotten better but I am still after 8 months experiencing numbness and tingling. I am not sleeping good as I worry about it when it comes on.
Taking this medicine has changed My life. I wish I never took it and this medicine should be banned. I would like to sue Bayer for this medication. I cannot believe I am dealing with this still after all the months.
My faith in God has got me through this but I am praying it disappears all together.
Deb
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Mike Layne
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Jeremiah
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You obviously have not met everyone who has been floxed! I am UNDERWEIGHT and had a job before I was floxed. You obviously have not read the new FDA warnings! You have not met the 5000+ people who are now in fluoroquinolones groups. You have not met people who have had had abdominal aorta aneurysms because of this good for nothing class of drugs.
Thanks to flouroquinolones, I have had four foot surgeries and now deal with peripheral neuropathy. I am not a drug seeker, in fact I refuse drugs and you will find most of us will as well. We would rather be in pain than deal with the side effects or the long term effects of pain meds.
We are not mental cases we just deal with arrogant people like you who think you know it all. You need to watch the FDA hearings and listen to the stories. You will see these people had lives and were active socially and physically before fluoroquinolones ruined their lives.
So get off your high horse so you had Cipro one time and did fine. So have others it was the accumulative effect that did them in. So who will be there for you when you take one fluoroquinolone too many? I hope you don't run into people like yourself. If so you will have no support system to get you through the day. You will be going from doctor to doctor to try to be heard. Your friends will leave you and so will your family.
Cheryl
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Shelly
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I'm not a doctor nor medical professional but clearly these women that have posted these long non sense ramblings about their various medical problems have mental illness. They remind me of my mother who enjoys nothing more than to talk about her "fibromyalgia" and other modalities. These crazy women are why normal people have to wait in the doctor's office for so long because you're in there fighting with your doctor about your crazy non sense stuff. And if they're like my mom's docs, they write her a script for a narcotic and antidepressant just to get this rambling woman who had no where better to be.
I absolutely agree that antibiotics are over prescribed since they can't do anything for viruses, and most of the time that's what people have. But when you really need them, don't start taking them, read crazy stuff online, then stop. That's the worst thing you can do.
I worked as a Massage Therapist for over 10 years and had so many clients with "fibromyalgia" I think doctors get these crazy menepausal depressed over weight women in their office who just go on and on about their aches and pain and tingling toes or whatever and diagnose them with fibromyalgia or cipro toxicity or whatever just to make them leave!
God help you if you're ever stuck in a conversation with one of these people. These women need to start exercising, lose weight, maybe get on anti depressants, give away about 10 cats, get on match.com and I bet their fibromyalgia and cipro toxic tingly toes would all go away. Have a healthy 2016 everyone! And stop googling every side effect and reading every crazy person's story because it will make you think you have every weird thing that some poor mouse got after they tested it on a million mice!
Dawn
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Terry Aston
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Prior to 1991, I was healthy, fit, athletic. I loved the sun and the outdoors. I worked the night shift summers, so I could water ski every day, rain or shine. I was a happy.Then one fate-changing day in 1991, I was prescribed Cipro. Thus began a slow slide of debilitating symptoms multiplied time and time again by repeated prescriptions of Cipro and other fluoroquinolone antibiotics (Levaquin, Avelox).
It took me 20 years to finally discover what was happening to me – with no help from my doctor, the medical community at large, the drug companies, the FDA – not any single person or organization whose purpose it is to protect patients like me.
How could my doctor harm me this way, never connect the dots, never realize he was poisoning my body over and over again? It was one thing after another: Coughing spells, allergic reactions, eye problems, debilitating joint pain. Is it not the doctor’s job to consider the side effect of what he prescribes? Is it not the responsibility of drug companies to clearly state warnings? Is it not the role of the FDA to make sure drugs capable of such irreversible damage are more closely regulated for the protection of citizens?
My doctor shrugged and kept prescribing. The corporations continued marketing these dangerous antibiotics for routine infections. Over time, the FDA issued not just one, but two so-called black box warnings. They were too little, too late for most people, and continue to be useless protection against what pharmaceutical reps say a drug is good for over dinner and drinks (or worse, when doctors have a financial stake is the success of the drug company).
Meanwhile, me? I have become completely disabled. It’s a crime. My life was hijacked-- stolen from me. I’ve worked hard all my life. I made sure I could wear many hats to keep myself employed. I earned licenses in cosmetology, CDL class A, phlebotomy, bartending. FQs took me down, I was a rare thing: a lady truck driver. I was a car hauler, driving and loading tractor trailers with brand new cars to the dealerships. I was a strong, self-sufficient woman . . . until I couldn’t read the VIN numbers anymore, and the chronic pain and muscle weakness made it unsafe for me to keep driving. My trucking career ended, and wasted was the $5,000 spent on driver school. Now I am a welfare recipient, and can barley care for myself. Keeping my house on $730.00 per month is impossible. Food sensitivities are caused by fluoroquinolone toxicity. I have a specialized, very limited diet because I am now allergic to so many things. Simply getting proper nourishment on $165.00 in food stamps is a constant struggle.
I lost my family because of my illness. Not even my own mother would look beyond the false sense of security the FDA gives to read or understand that my illness is real, and devastating. What could make this terrible illness worse? The shame we face as our doctors, employers, friends and family don’t believe us, because it is too hard to imagine such a thing could happen in America in the 21st century.
In 1991, prior to starting a new job, I was prescribed Cipro. I soon complained to my doctor about a painful burning sensation in my feet. He said it was fatigue from standing on my feet all day. I complained about cracking and popping joints, dry, swollen eyes, back pain. He said I was “getting old.” I was in my early 30s. I was prescribed Ambien for insomnia. I complained repeatedly of not feeling well. [The doctor] never took a culture of any kind, but insisted I had infections, and continued prescribing me Cipro time and again. In 1994, he diagnosed me with Chronic Fatigue, and prescribed Cipro. He told me I was depressed. I was not. My body was being poisoned. Still, I managed to work through the pain.
In 2003, I was prescribed Avelox. I returned to [my doctor] complaining about the increasing pain and eye problems. The sicker I got, the more I was prescribed the very fluoroquinolones that were harming me. After Cipro, it was Levaquin. Then he sent me to a pain clinic where I was given steroid injections known to dramatically raise the risk of adverse effects of FQs. But I didn’t know that then, and no one who should have known bothered asking about other medications. Dentist totaled me by mixing the Cipro and Levaquin with steroids, lidocaine and nitrous oxide. Not one doctor would help me with what was clearly an adverse reaction to mega doses of fluoroqinolones. I even went to Johns Hopkins only to be prescribed more Levaquin!
My pharmacy records show I have been prescribed 250 pills of Fluoroquinolones.
It is a wonder I am even alive.
Not once was I suffering from a life-threatening infection that required such a potent drug.
I paid [my doctor] to take care of my health, and he destroyed my body. He prescribed an obscene amount of Levaquin to me – harming me – while simultaneously being paid handsomely for “research” by the makers of Levaquin, Johnson and Johnson (Source: Dollars for Doctors, ProPublica).
Today I am now pretty much house bound and disabled. I became active in Facebook forums, searching for answers, and found thousands of people who share my story, people who exchange information, ideas, and emotional support.
The drug companies may tell you this affects 1% of patients, but anecdotally, it is more like 1 in 4 will have some severe reaction. Our numbers are growing every day. We are organized, and working together to seek action.
Fluoroquinolone Toxicity MUST be stopped. It is time for our government to stand up on behalf of the PEOPLE being harmed by these medications.
We’re asking you to call on the FDA to recall or reclassify Fluoroquinolone Antibiotics so they are never used for suspected or routine infections again. We’re asking you to help us secure funding for independent research on treatment plans for victims. And we’re asking for standardized diagnostic codes that recognize our illness and its cause, to manage insurance benefits as well as track the true impact of FQ toxicity, which is frequently misdiagnosed as one of many autoimmune disorders of unknown cause. The cause is known. It’s time to take a stand.
You can join us on Facebook “Fluoroquinolone Toxicty 24/7 Live Chat”
Stop Bayer Pharmaceuticals
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Charles Tooraen
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Currently I am in pretty bad shape. My story is unfortunately similar to many that have taken Cipro, Levaquin, Avelox, and many other Fluoroquinolone antibiotics. All started in June of this year with a kidney stone. Previous to this, I have been an active, healthy individual with virtually no health issues other than a couple bad stomach bugs, over the years. I have not had a flu shot in 20 years. Have not had any major illness ever. I worked 14 hour days in the southern New Mexico oil fields for Halliburton as a Tech. Keep an entire production and stimulation crew running. After that I was managing 40 oil wells for Concho, the largest oil producer in the state. Great job, great friends, had a good life. Little did I know.........
From June to September of 2013 I had 4 kidney stone attacks. The 4th one ended with me getting lithotripsy to remove the stone. Levaquin IV was given preoperative and week followup of cipro 500 mg 2x day. All was fine then had the stent removed during outpatient procedure. Single 500 mg cipro dose given then. After this all was good for about a week. Then started having groin pain for about 3 weeks. Dr did another outpatient cytoscopy and said all was fine. Another single 500 mg dose of cipro. Still had pain. So doc did prostate exam and found elevated white blood cells. No culture was done. Script was 500 mg 2x day of cipro for 6 weeks. No help with pain. Dr added sulindac NSAID to help. 12/7 had another surgery performed to make sure no small stones or strictures were present. None found. More preoperative Levaquin given via IV. About a week later started feeling better. I knew of risk factors with cipro and was paying attention to them. On 12/28. Noticed tight muscles in my calves and by next morning the burning in my legs began. Stopped taking cipro that day. Dr said that cipro could cause the muscle issues but did not know of issues with neuropathy. So now 8 months out I have insomnia, peripheral neuropathy, tinnitus, cognitive dysfunction, suicidal thoughts, depression, some anxiety, and mild depersonalization, chronic fatigue, dye eyes and ears, dry mouth, intolerance to heat and cold. Cold hands and feet, improper sweating. Gi motility dysfunction, lost 30 lbs so far.
Cannot work, cannot sleep, cannot walk correctly somedays, cannot care for myself. My spouse now does 90 percent of the work for both of us. I spend most of days in bed. This issue has created a lot of stress and depression not only for me, but for my entire family, which now has to help me with many aspects of my life. The uncertainty of recovery also plays a large role in my overall stress/anxiety level.
Now it's August of 2014. Been to Mayo, University of Washington, The Peripheral Nerve Clinic, and Anderson Specialty Medical Clinic, and Progressive Medical Center in Atlanta so far. Tried IV Therapy, supplements, vitamins, Physical Therapy, Analgesic Nerve Therapy, etc. Had almost every test imaginable. MRI, CT Scans, Blood tests, autonomic tests. Have more tests coming. So far, not much of any improvement. Some better with sleep, but still have to take all kinds of drugs to get sleep. Anxiety is not bad, tendinopathy is better, and some slow improvements in GI function, but have bad relapses every couple weeks. Have spend 10's of thousands of dollars, not including insurance paid costs, for treatments, supplements, travel, etc.
There are reports that many of the symptoms are tied to mitochondrial dysfunction and autonomic system dysfunction. I have added a file outlining the new request to the FDA about the dangers of Mitochondrial toxicity caused by fluoroquinolones. Mito dysfunction causes an entire cascade effect and creates a vicious circle of ROS and cell apoptosis. I could kill you with the technical details regarding NO/OONO cycles, Electron Transport Chain, oxidative phosphorylation, anerobic cell respiration, etc, but I have posted some references at this end of this email.
I just want people to know what many practitioners, do not tell you when they give you drugs. There is no INFORMED CONSENT, no consultation, no nothing, they usually just give you a pill and send you home. They leave it up to you to find out what the pill may do to you. For me, I have never had issues with any drugs, especially an antibiotic, so I trusted the Dr to know what he was doing. Now I am screwed up permanently. Please just do your homework and make sound decisions before you trust your health to someone else.
I totally understand that not all doctors are idiots. Actually, I have met quite a few that are very good, and informed, so I don't fault the entire medical profession. I do however blame the "system" we have, that promotes 15 minute DR visits, insurance companies that deny claims based on cost/benefit analysis, regardless of what the best interests of the patient, or if the doctor deems a procedure necessary. There is too much emphasis on costs, not the care of the patient. Both insurance and the medical profession are to blame. Case in point when I had my tests done at Progressive Med Center in Atlanta, the cost to the insurance company was 13K. My costs for the same tests if I was paying for them was 3K......
I also see that responsibility lies in the realm of the patient, and society to a certain degree. Many people in our time, either are not patient enough to allow an illness to take it's time pass, or just (due to the demands that society puts on us), don't have the time to wait for an illness to pass. So they come in to doctors office and demand a quick fix. "Don't you have a pill for that" is a common phrase that comes to mind. So doctors are trained to make sure a person is not dying, run some labs and based on lab results, prescribe a bill recommended by the companies that make the pill. Look at how many pharmaceutical commercials you see now.
Not that long ago, in many cases, doctors would prescribe things less noxious, and or would recommend diet and lifestyle changes to help with issues we had. Now it's 10 minutes in the office, a few cursory glances, and a script. Some of this is simply dictated by the insurance company and what they will pay for office visits.
Case in point, my urologist did not even culture my EPS, just looked under a scope and said "WBC count high, consistent with infection" and loaded me up with cipro, no consult, no warning, no nothing. I am not a doctor and I know that high WBC can also be due to inflammation, not related to infection. I was in pain, and suffering after the surgery for months, and I attributed it to the surgery, and maybe infection, so I keep taking the crap, not realizing that it was in fact most likely the cause for my symptoms. By the time my legs went out on me, it was too late. So now I am a prisoner in my own house, bound to the recliner. I am lucky as my spouse takes good care of me, but she is very stressed trying to keep it all together.
Don't get me wrong, I do think these kinds of antibiotics are useful, and in some cases are the the only option, but doctors really need to be more informed of the dangers. I cannot tell you how many doctors have no idea of the adverse affects this class of antibiotics can cause. Secondly they need to make sure the patient is fully aware of the possible issues they could have with these drugs and that all other options have been tried before hand.
If I was a practitioner, I would be damn certain a person needed a fluoroquinolone, and I have exhausted all other options before prescribing it. Then if needed, informed consent to the patient would be mandatory, and I would have weekly follow up and labs done to ensure they were responding well to the drugs. Of course the minimum dosage and duration would be paramount.
Here are some links that further describe what has happened to me, and thousands of others.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/
www.ncbi.nlm.nih.gov/pmc/articles/PMC2094848/
www.facebook.com/FluoroquinoloneToxicity
en.wikipedia.org/wiki/Adverse_effects_of_fluoroquinolones
well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_php=true&_type=blogs&_r=0
fda.gov/Drugs/DrugSafety/ucm365050.htm
survivingcipro.com/
floxiehope.com/
www.facebook.com/pages/The-Fluoroquinolone-Wall-of-Pain/209182505773463
All the Best,
Charles Tooraen
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