In most cases, adverse reactions occur very quickly, sometimes after just a few pills. Reactions are usually multiple and involve many body systems.
In Dr. Cohen's 2001 study, the following reaction rates were documented:
Nervous system symptoms occurred in 91 percent of patients (pain, tingling and numbness, dizziness, malaise, weakness, headaches, anxiety and panic, loss of memory, psychosis)
Musculoskeletal symptoms in 73 percent of patients (tendon ruptures, tendonitis, weakness, joint swelling)
Sensory symptoms in 42 percent of patients (tinnitus, altered visual, olfactory, and auditory function)
Cardiovascular symptoms in 36 percent of patients (tachycardia, shortness of breath, chest pain, palpitations)
Skin reactions in 29 percent of patients (rashes, hair loss, sweating, intolerance to heat or cold)
Gastrointestinal symptoms in 18 percent of patients (nausea, vomiting, diarrhea, abdominal pain)
-----
It is important to realize that these adverse reactions to fluoroquinolones are not rare.
When patients begin to have a serious problem, their physicians typically dismiss their complaints out of ignorance or misinformation. When caring physicians do try to find out what is causing the problem, test results are often normal (although MRI's may be positive in people with ruptured tendons).
In most cases, the adverse reactions are not immediately traced back to the fluoroquinolone--a situation made worse when your physician tells you that what you're experiencing is unrelated to your meds.
So you're likely to continue the medication that is making you sick, causing worse damage, which is, unfortunately, sometimes permanent.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was told tendonitis was extremely rare and nothing to worry about. When I got it, I was told to continue taking levaquin because I was herxing. Later, after I quit and continued to have pain for 8 months, I was told that it was probably not even related and the tendonitis was a flare. Then I was encouraged to take another fluroquinolone, being told even if the shoulder pain was tendonitis related to the levaquin, factive would not have the same effect
You just have to educate yourself and be careful of every drug you are taking.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sparkle7
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posted
Yeah, I know. They are either ignorant, in denial, or getting some kind of kickbacks from the drug companies....
The FDA is corrupt & the agencies that are supposed to be protecting us are probably sitting around downloading porn on their taxpayer paid computers with their taxpayer paid salaries... (Sorry to be so cynical. I don't mean to offend anyone.)
We have to be careful & do the research on our own.
Many "side effects" of drugs can be the same as "symptoms" of Lyme or "herxing". How are we supposed to know?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
The quinolones also referred to as fluoroquinolones are a family of synthetic broad-spectrum antibiotics.
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Quinolones in comparison to other antibiotic classes have the highest risk of causing colonization with MRSA and C Difficile. A general avoidance of fluoroquinolones is recommended based on the available evidence and clinical guidelines.[7][8][9]
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The serious events may occur during therapeutic use at therapeutic dose levels or with acute overdose. At therapeutic doses they include: central nervous system toxicity, cardiovascular toxicity, tendon / articular toxicity, and rarely hepatic toxicity.[32]
Caution is required in patients with liver disease.[33] Events that may occur in acute overdose are rare and include renal failure and seizure.[32] Susceptible groups of patients such as children and the elderly are at greater risk of adverse reactions during therapeutic use.[23][24]
Adverse reactions may manifest during, as well as after fluoroquinolone therapy has been completed.[34] Fluoroquinolones are considered high-risk antibiotics for the development of C Difficile and MRSA infections.[7][35]
A previoualy rare strain of C Difficile that produces a more severe disease with increased levels of C Difficile toxins is becoming epidemic and may be connected to the use of fluoroquinolones.[36] Fluoroquinolones are more strongly associated with C difficile infections than other antibiotics including clindamycin, third-generation cephalosporins, and beta lactamase inhibitors.
One study found that fluoroquinolones were responsible for 55% of C difficile infections.[37] The European Center for Disease Prevention and Control recommend that fluoroquinolones and the antibiotic clindamycin are avoided in clinical practice due to their high association with clostridium difficile, a potentially life-threatening super-infection.[8]
The central nervous system is an important target for fluoroquinolone-mediated neurotoxicity. Adverse event reporting in Italy by doctors showed fluoroquinolones among the top 3 prescribed drugs for causing adverse neurological and psychiatric effects.
These neuropsychiatric effects included tremor, confusion, anxiety, insomnia, agitation, and, in severe cases, psychosis. Moxifloxacin came out worst among the quinolones for causing CNS toxicity.[38] Some support and patient advocacy groups refer to these adverse events as "fluoroquinolone toxicity".
Some people from these groups claim to have suffered serious long-term harm to their health from using fluoroquinolones. This has led to a class-action lawsuit by people harmed by the use of fluoroquinolones as well as action by the consumer advocate group Public Citizen.[39][40]
Partly as a result of the efforts of Public Citizen, the FDA ordered black box warnings on all fluoroquinolones, advising consumers of the possible toxic effects of fluoroquinolones on tendons.[41]
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Quinolones are synthetic chemotherapeutic agents that have a broad spectrum of antimicrobial activity as well as a unique mechanism of action, resulting in inhibition of bacterial DNA gyrase and topoisomerase IV.
Quinolones inhibit the bacterial DNA gyrase or the topoisomerase IV enzyme, thereby inhibiting DNA replication and transcription. Quinolones can enter cells easily via porins and, therefore, are often used to treat intracellular pathogens such as Legionella pneumophila and Mycoplasma pneumoniae.
For many gram-negative bacteria, DNA gyrase is the target, whereas topoisomerase IV is the target for many gram-positive bacteria.
It is believed that eukaryotic cells do not contain DNA gyrase or topoisomerase IV. However, there is debate concerning whether the quinolones still have such an adverse effect on the DNA of healthy cells, in the manner described above, hence contributing to their adverse safety profile.
This class has been shown to damage mitochondrial DNA.[66][67][68][69][70][71][72][73]
----
[On a political note...]
Under the George W. Bush administration (2001-2008), patent extension legislation that allowed Bayer AG, as well as other drug companies, a six-month patent extension for testing their products for safety in children was signed into law.
It has been estimated that Bayer A.G.'s revenue increased an extra $358 million due to ciprofloxacin's pediatric patent extension.
The legislation that was signed by President George W. Bush, granting Bayer and other drug manufacturers a six-month extension on their patents (to conduct pediatric testing), was drafted after extensive lobbying of numerous members of Congress by Bayer A.G. and others.
One of the four sponsors of this legislation was Chris Dodd (D-CT), who, at the time, ranked as one of the top three beneficiaries of campaign contributions by drug companies.
Sen. Edward Kennedy (D-Mass.), who chaired the committee with jurisdiction over the bill, refused to fight over the language that (if it had been included) would have reduced the drug company's profits due to these patent extensions.
The reasons for Sen. Edward Kennedy's decision not to fight for the inclusion of this language were not made known.[90]
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Within a 2005 memo, the FDA reviewed seventeen unique pediatric cases reported to the FDA during the thirteen-month period after the pediatric exclusivity for ciprofloxacin had been granted.
During this period, there was one report of death, two of disability, and four of hospitalization.
The disabilities involved the inability to walk (in a 12-year-old female patient) and the inability to run (in a 12-year-old male patient). The hospital admissions were for pseudomembranous colitis, pancytopenia, tendonitis, and Stevens Johnson Syndrome.
The female patient received 5 weeks of ciprofloxacin oral therapy at the recommended doses.
Even though ciprofloxacin was discontinued, she could not stand or ambulate and required a wheelchair one month later.
These seventeen unique pediatric cases showed mostly hematological, musculoskeletal, allergic/hypersensitivity, and central nervous system adverse events.
It does not appear that this executive summary was ever released to the medical community.[92]
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
We should be aware of the pros and cons with each drug or treatment we use.
While reading this post on the dangers of fluoroquinolones I was reminded of a situation where Cipro was literally a life saver.
My friend's son was terribly sick with an ear infection. The doctor's tried treating it with drops and many oral antibiotics but nothing was working. They were very concerned that he was on the verge of developing sepsis and meningitis because the infection was raging out of control.
The boy was 16yrs old and fluoroquinolones are not recommended for use in children. The doctors suspected that he had an unusually resistant strain of pseudomonas. The doctor's weighed the pros and cons, discussed this with his mom, and decided to try treating with Cipro before admitting him to the hospital for IV therapy.
Within a couple hours his fever broke. He began to feel better that evening. By the next day he was smiling again. Seeing how sick he was before, I was thrilled to see him better!
Fluoroquinolones are potent drugs. They should only be taken to treat serious infections. That is why they were created.
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sparkle7
Frequent Contributor (5K+ posts)
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posted
That's interesting. I'm glad it helped someone after reading all the bad news about it.
How did they find out it was pseudomonas? How did it get you your friend's son's ear? Just curious?
BTW - I'm not against drugs. We just have to be aware of the dangers. If I was prescribed cipro & I read the possible side effects, I might want to try other drugs first. It's would be awful to still be ill with Lyme & company & get really ill from a drug reaction on top of it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I picked up a bottle of Cipro in Mexico a few weeks ago and thought of self-prescribing it based on things I had read in this forum.
Then I read further and uncovered on the internet the info like what's above regarding Cipro.
What I read scared me so I decided to wait to see my LLMD (first appt).
At my appt I was prescribed Cipro.
Duh, me: so I was ready to start taking it because of what: 1. I read on the forum
2. and because my LLMD seemed to back it.
But you know,just because a LLMD prescribes something doesn't mean I should take it. Anyone object to that?
I know I'm calling them on Monday...
My son never had to take Cipro. So why was I prescribed it and not something else?
Posts: 43 | From Southeastern US | Registered: Jul 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Sparkle, they were not sure how the boy got the pseudomonas infection. It is a common pathogen found in the environment (water and soil). Usually does not cause a problem unless you are immune compromised.
It started out as "swimmer's ear" then progressed, but the boy had not been swimming. He was on the varsity soccer team and had been practicing with his team three times per day. He got a shower at home after each practice.
This happened last summer. The boy is never sick. Super healthy athlete, good student. That's why his illness seemed so unusual. He got very sick very quickly.
The doctors tried all kinds of different antibiotics while they waited for culture and sensitivity results. They eventually came back positive for pseudomonas and a mix of other bacteria. I just remember pseudomonas being the key, none of the other antibiotics were effective against it. That's why he needed the Cipro.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I was wrong. I was prescribed Septra, not Cipro.
Posts: 43 | From Southeastern US | Registered: Jul 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
sammy - That's pretty weird. My first thought that it was swimming... Thanks for the info.
Aleigh - It's better to research it & know for yourself what you are taking, just to be on the safe side. Doctors do make mistakes. I don't have any problems with people self-treating. Sometimes, you have to.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
All drugs have side effects. I know that the fluroquinolones have been the most helpful meds hubby has taken. Oral Cipro didn't do much of anything and IV Cipro was too strong. But oral Levaquin and oral Factive have been miracle drugs for hubby in treating bartonella, BLO, mycoplasma or whatever the mystery pathogen is that has been seen 3 times on F lab slides and once on a Clongen bloodslide.
His bilirubin came down to normal and his RBC, WBC, hemoglobin and hematocrit all increased to normal on factive. Factive by itself was helpful, but the combo of factive and rifampin has been of much more benefit.
Pretty sure we will need to add something else to the med mix to finally get rid of this unknown pathogen.
But without the fluroquinolones hubby would still be having seizure-like episodes and Parkinsonian tremors and the list goes on.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sammy said... "While reading this post on the dangers of fluoroquinolones I was reminded of a situation where Cipro was literally a life saver."
Add me to the list of people whose lives were saved by Cipro.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's sort of a gamble, though. Some people have died or ended up disabled from taking it.
I would only take it if it were the last resort. The doctors were giving them out for respiratory infections & non-life threatening illnesses. How would they know if a person was going to develop a disabling side effect?
I think it's important to know that there are risks involved with this drug. Especially, with children.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
The drug is seen as the first resort in the medical community. If you have a UTI, you are probably going to be prescribed Cipro when drugs like Ceftin are usually effective and much more safe.
Cipro really injured me. Probably as much as Lyme disease itself. I received a double whammy. I didn't want to accept that was the case until about the 5 or 6 month point when I started to see a bit of recovery. I was prescribed Cipro as a first resort by my LLMD when there were alternatives.
My mom was prescribed Cipro for a bladder/kidney infection recently. I wouldn't let her take it and gave her Ceftin. Sure, I am not a doctor, but it was my mother, and I don't believe the whole "doctors know best" crap. I will not willfully let my mother get injured. I am starting Rocephin soon, and I'll make sure I'll wear my fluoroquinolone medic alert bracelet. I personally won't touch those nasty, chemotherapeutic agents ever again. Let me die instead.
I know there are people that tout the drug saved them. However, I still wonder what goes through the mind of pharmaceutical companies when designing drugs like these. Can they create something effective and without chemotherapeutic properties that is not a threat to human life? Why is it still marketed as a "safe for everyone" type drug. And why are doctors prescribing them like candy? Have they actually read the literature, or do they trust their marketing friend more?
My mother's previous doctor suffered a heart attack after taking Cipro. She stopped practicing medicine. She was a fit lady, and when my mom saw her at the grocery store, she was large and told her that she wasn't practicing anymore because Cipro almost killed her. I only learned this after I told my mom not to take Cipro.
I saw this doctor once in high school for a check up and at the time I found her to act snotty and arrogant (I wouldn't usually remember things like this unless I was disgusted). If she starts practicing again, my bet is she will take a new look at medicine and human beings.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sparkle said.. "Some people have died or ended up disabled from taking it."
Some people unfortunately die from Lyme and tick borne diseases too.
Some also die from taking aspirin, tylenol, and even eating shrimp, peanuts or Chinese food.
My thought is... that is why we all need to be diligent in not making all encompassing, blanket statements about anything being "safe", "not safe" or "enough" or "not enough" for all.
We are ALL different and we will have different results. What's good for the goose may not be good for the gander.
Sparkle said.. "How would they know if a person was going to develop a disabling side effect?"
Not many ways to tell. Life is a gamble in many ways and you either decide to risk doing any one thing or not. We all make those decisions every day we live and breathe. Even the most intelligent person or computer can't predict what will happen in all cases.
Then there is the religious side of it too. Isn't it ultimately up to Him what happens?
Sparkle said.. "I think it's important to know that there are risks involved with this drug."
Yes, I agree.... education helps. It is a must to avoid unnecessary risks.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I still think it's important to know about this.
Tincup - you might have felt different about it if you were someone who had been disabled by this drug. I'm glad you are OK & that it helped when nothing else could.
Yes, we can all die any day due to a number of things. I just think there should be more caution about taking antibiotics. I don't think they should be illegal or that people should only take 30 days worth if they need more. There are a number of risks, though.
We need to be able to fully consider their good sides & bad - especially given the nastiness of the down side on this one in particular.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Cipro has been a very bad thing for me....it was prescribed for diverticulitis, and within a week, I felt terrible. Got off it, and within days, I was better....but it aggravated my Lyme neuro symptoms, and I still am having a sore tendon right above the back of my foot.
Be very careful! I almost passed out a couple times....couldn't drive, etc.
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Cipro seemed to be a tough one for our daughter. At first I thought she was herxing and Dr. felt the same.
5 weeks into treatment we had to stop, too many side effects. I do not think they were herx related, but so hard to tell.
Her anxiety increased, I do believe it was causing low blood sugar, headaches, aches and pain, nerve pain. etc, Almost panic attacks.
It took almost two weeks after stopping the Cipro before the side effects went away.
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
OK Guys, now I don't know what to think...
My husband started levaquin (related to cipro, right?) 10 days ago.
Quick background on him. 5 years ago had a bull's eye. On and off over the years, he has had fatigue, tingling fingers, headache, increased allergies, leaky gut, and almost every night for the last 5 years he's had terrible sleep.
But basically he's a very healthy guy, feeling good, able to work hard.
Putting all the pieces together, he started treatment 3 months ago. My kids and I have definite symptoms of Bart, and hubby's being treated for bart too.
He's been on Bactrim, Ceftin, Rifampin and Zith. Nothing really affected him with the acception of a tired day or headache here and there.
So, the Levaquin. I can tell he doesn't feel well. He's had sharp headaches, brain fog, eye pain, and has been very fatigued. He also got 2 itchy "hives" but didn't show them to me until they were almost gone. He hasn't gotten any more.
I'm struggling... is the Levaquin finally touching Bart that nothing else seemed to or is he messing with fire and should call his doctor?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
FYI -
My intent isn't to make people stop their treatment. If just one person doesn't get a serious adverse reaction - it's worth the caution...
Fluoroquinolones are a class of antibiotics that include Levaquin, Cipro, Avelox, Tequin, Factive, Floxin and others. A more complete list can be found at http://en.wikipedia.org/wiki/Fluoroquinolone.
Why should I care?
Fluoroquinolones were originally designed and approved for serious infections which do not respond to traditional antibiotic therapy. However, they are increasingly being prescribed for routine infections that do not warrant such powerful and dangerous antibacterials.
The end result of this is a large (and continuously growing) number of people who have been needlessly afflicted with severe, non-abating adverse reactions to this class of drugs.
All Drugs Have Side Effects, What Makes Fluoroquinolones Special?
Conventional wisdom states that once a patient stops taking a medication, any side effects experienced will likewise stop. This is not true for fluoroquinolones. In fact, the opposite is often the case; new side effects can continue to appear and worsen for months (in some cases even years) after the drug has been discontinued. Oftentimes, this can lead to a situation where the patient does not recognize the cause of their newfound symptoms. The potential for serious harm is then greatly magnified as the patient runs the risk of being prescribed another fluoroquinolone antibiotic in the future.
Further, there is a very real potential for permanent damage which can leave the patient severely disabled for the rest of his/her life.
I think I might have taken one of the drugs in that list above in the past, what should I do now?
There is very little that can be done once the drug has already been ingested. However, there is no need to panic; many people can take these drugs without suffering any noticeable ill effects. Please check the following list of the side effects most commonly reported by members of the forums devoted to reactions to these drugs and see if you experienced any of them either during or after fluoroquinolone therapy:
Fatigue, tendonitis/tendinopathy (especially tendonitis without any specific known cause), tendon rupture, joint pain (arthralgia), muscle weakness/soreness, peripheral neuropathy, muscle spasms (fasciculations), popping/cracking joints, endurance problems, tinnitus (ringing in the ears), heart palpitations, anxiety attacks, brain fog, depersonalization, memory loss, difficulty finding the right word at times, seizures, buzzing/tingling/vibratory sensations, dry eyes/mouth/sinuses, numbness (especially at night), floaters/blank spots in field of vision.
There are, of course, less common and significantly more severe side-effects as well, such as cardiac arrest, torsades de pointes (elongation of the QT rhythm), kidney/liver failure, and rhabdomyolysis.
If, while reading that list, you found yourself nodding in agreement an inordinate amount of the time, you may be suffering from adverse reactions to a fluoroquinolone antibiotic.
What can I do?
If you've read this far, you have already educated yourself as to the potential risks associated with fluoroquinolone antibiotics. Whether or not you are ever prescribed one of these drugs and whether or not you decide to ever take them, you at least know what to look out for and have been granted a level of informed consent that was never given to the majority of those who are now suffering their ill effects.
The next step is to educate your friends and your family about this issue. Odds are that someone you know, possibly someone you care about, has already been prescribed and has taken one of these drugs.
If you wish to go further, please join this site and post; we can always use some caring individuals who are willing to donate their time and effort to raise awareness about this issue (or even just hang around and share ideas). Like any other important cause in the world, there is strength in numbers.
Our goal here is not to get these drugs banned from clinical use. It is merely to educate patients and doctors about the potential for serious and potentially permanent reactions and to limit the use of these drugs to their original purpose, which is to combat infections that are resistant to other forms of antibacterial therapy.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
When my son was in his Master's program in Organic Chemistry, he tutored pre-med students. It scared the pants off him to realize how little they understood, how unintelligent many of they were, since these would be our future medical doctors.
Question: What do you call an M.D. who got through medical school with a "D" average?
Answer: M.D.
A good, knowledgable and humble doctor is worth his weight in gold, but in my lifelong experience with M.D.'s, a good doctor is the exception and not the rule.
DO check and research and DON'T accept what your doctor tells you blindly (and that especially goes for taking the meds so freely dispensed).
My son now works for a major pharmaceutical company, and he is not pro-medication. He himself won't take so much as an aspirin for a headache ... and when the H1N1 vaccine was offered, greater than 50% of the chemists he works with said they would not take it ... don't depend on the FDA either. It's true that they are more rigorous today about approving new drugs, but it's also true that many of the new drugs approved have had to be withdrawn afterwards because of numerous severe side-effects and deaths. Not to mention that many of the drugs approved are approved for a specific condition but later used "off-label" for many more conditions. (Pharmaceutical marketing or physician's license?)
I could relate some horror stories of my own involving family members, but I'll not ramble on and on.
sparkle7 is absolutely correct.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Just seeing this should make some people a bit cautious.... (posted above from Wikipedia - not a "conspiracy" website) -
"Under the George W. Bush administration (2001-2008), patent extension legislation that allowed Bayer AG, as well as other drug companies, a six-month patent extension for testing their products for safety in children was signed into law.
It has been estimated that Bayer A.G.'s revenue increased an extra $358 million due to ciprofloxacin's pediatric patent extension. "
$358 million. That's alot of money. This is what it comes down to... Your health & safety vs. big profits for shareholders (politicians, doctors, lobbyists, etc.). The fox is guarding the hen house. We need to be very careful. Look at what just happened in the Gulf of Mexico. Who was looking out for us then?
I bet all of this is just the tip of the iceberg, too.
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