adverse events fluoroquinolones

When Investigating Fluoroquinolone Reactions, Move Beyond the ER

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When trying to determine the danger associated with a drug, the number of Emergency Room (ER) visits that result from use of that drug is often cited. While anaphylactic shock and other acute ER worthy reactions should certainly be measured, exclusively looking at how often a drug leads to ER visits is not a comprehensive, or accurate, way of determining the danger of a drug. Simply looking at ER visits leads those trying to determine the risk associated with a drug to fail to take into consideration chronic illnesses and conditions that are caused by prescription drugs, and leads them to only recognize adverse reactions that are immediately life-threatening. Acute and temporary reactions are over-emphasized while systemic and chronic reactions are under-recognized.

When Only ER Visits are Considered, Fluoroquinolones Look Safe

For example, when comparing the safety profiles of different antibiotics, the following was noted in the Journal of Family Practice:

The Centers for Disease Control and Prevention estimates that adverse events from FQs (fluoroquinolone antibiotics) leading to emergency department (ED) visits occur at a rate of 9.2 for every 10,000 prescriptions. That’s higher than the ED rates for cephalosporins (6.1 per 10,000) and macrolides (5.1 per 10,000), but far lower than for penicillins (13 per 10,000), clindamycin (18.5 per 10,000), sulfonamides (18.9 per 10,000), and vancomycin (24.1 per 10,000).

Thus, fluoroquinolone antibiotics are slightly less safe than cephalosporins and macrolides, but slightly more safe than penicillins, clindamycins, sulfonamides and vancomycin, right? That’s what the statistics around trips to the ER clearly note. However, what these data fail to take into account is that adverse reactions to fluoroquinolones are not generally allergic or acute reactions, whereas adverse reactions to penicillins, clindamycins and sulfonamides are. The ER is the place to go when suffering from an acute reaction. When a patient is going through anaphylactic shock or inflammation that is threatening their life as a result of an allergic reaction, the ER is where their life can be saved.  It is where epinephrine, steroids and antihistamines can be administered, and those drugs can save the life of a patient experiencing a severe allergic reaction.  Adverse reactions to fluoroquinolones are not allergic reactions. Though anaphylactic shock can occur as a result of taking a fluoroquinolone, it is an uncommon adverse effect.

More often, those experiencing adverse reactions to fluoroquinolones experience weakening of all of the connective tissues in their body (especially tendons), peripheral neuropathy, insomnia and/or other CNS related symptoms, debilitating fatigue, dysautonomia, etc.  None of these conditions warrant a trip to the ER, yet they are serious and severe symptoms of Fluoroquinolone Toxicity Syndrome. In only looking at ER visits when trying to determine the safety of a drug, the symptoms of an adverse drug reaction that are chronic, as opposed to transient like allergic reactions, are systematically disregarded and the safety profile of the drug is not accurately represented.

Conditions that can be quantified and measured using tests and data-points that are currently easily at the disposal of doctors, and conditions that can be rectified through the tools that are available to doctors – like allergic reactions to penicillin – are recognized.  Everything else is considered to be non-existent, mysterious or all in a patient’s head (as if what is in a patient’s head isn’t important). Systemic, chronic injuries caused by fluoroquinolones and other drugs are not seen because only adverse drug reactions that result in ER visits “count.” This is a problem because if doctors are only looking at a single data-point for determining the safety of a drug, and that data-point is the wrong one to look at, no one is getting an accurate or complete picture of the safety of drugs.

The frequency of adverse reactions to drugs that are more chronic and systemic in nature can be determined through long-term studies that take into consideration things like lifetime tolerance thresholds, delayed adverse reactions, etc. They should be implemented so that patients and doctors alike can have an accurate and comprehensive notion of the dangers of the drugs that are prescribed. ER visits are easy to calculate while long-term studies that recognize issues that are difficult to quantify (because the right tests are difficult to find and expensive to administer) are very difficult to conduct. Therefore, out of laziness, inertia and lack of funding, the wrong data is considered and drugs that cause chronic issues are falsely thought to have inflated safety records.

Asking the wrong question and expecting the right answer has never served anyone well, and doing that systematically in medicine is not serving patients or doctors well. It is not good for healthcare and it is not good for anyone seeking the truth about adverse drug reactions. If one wants to know the answer to the question of “How safe are fluoroquinolones?” we must move beyond trips to the ER and standard acute adverse reactions. Simply looking at ER visits is intellectually shortsighted and it leads to a false sense of security when prescribing dangerous drugs. Perhaps gathering some additional data-points should be considered.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Share Your Story

If you have experienced injury or illness from a fluoroquinolone antibiotic, share you story.

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This article was published previously in December 2013.

Musings of a Heretic Patient: Floxed and Fed Up

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After mulling it over for quite some time, I wanted to comment on something we all encounter much too frequently in our floxed lives. That is, specifically, the negative experiences we are often forced to endure with our doctors. As patients, harmed by a widely over prescribed drug, we are often dismissed whenever we propose a connection between fluoroquinolones and the adverse side effects we experience as their patients.

I cannot even begin to quantify the level of frustration and anger I feel whenever I’ve been confronted with this in my doctors visits. It’s demeaning and demoralizing to be treated as if I am a complete moron for broaching the subject whenever they come up empty on their diagnosis.

At first I chalked it up to ego because after all, THEY are the “experts” and I am just one of the great uneducated with the audacity to question their expertise and search for answers beyond their own. I know what it feels like to be sneeringly, denigrated for my research. To be called a GOOGLE doctor for simply not accepting their non-diagnosis as a diagnosis.

Oh, the times I felt like screaming and pulling my hair out in my doctor’s office. The times I became so frustrated I wanted to overturn the tables and rip those stupid charts from the walls are just too innumerable to count on my flox journey.

Laying the blame on ego alone was the simplistic answer but something always niggled at me every time I left the office, depressed and defeated.

Why was I always making excuses for what was so obviously a rude and demeaning attitude towards my quest for answers? Why were all my doctors so hostile to my input and so dismissive of my efforts at educating myself? What lay beneath this dismissal of my pain and the destruction of my body that even they could not deny?

Today it happened again and it sparked me into writing this post.

The Heresy of Questioning a Doctor

I have come to learn that a few of the common tactics used by doctors can be identified. Many of them are being used to work against us when confronting a doctor’s assessment of our specific issues.

The first one is utilizing our lack of a formal medical education to minimize our efforts. It’s the most obvious use of the power dynamic they conjure to silence us. Questioning a doctor is an anarchistic act. It challenges the authority of the empirical medical model, the one we’ve been programmed from childhood to believe has all the answers. The one domain that is so sacrosanct in our society that questioning it is bordering on the heretical and places you squarely outside the acceptable behavior circle.

I have come to accept that I am now a heretic and so is anyone who steps outside the medical status quo in their search for answers. Like any heretic, I need to be prepared for the onslaught of disapproval and derision I might receive for questioning the medical gods. I need to remember to arm myself psychically and mentally for every visit. The fact that I must do this saddens me. It illustrates just how meaningless and hollow the Hippocratic Oath has become to our modern medicine men.

“Nor shall any man’s entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so.”

Plausible Deniability in Medicine

Another tactic used by physicians to dismiss patient concerns is plausible deniability. Physicians now rely on plausible deniability to explain away their non actions or worse. It is the deliberate and destructive act they use against the very people they have sworn to heal. It’s also known as covering their asses. Knowing this and accepting that this is the norm rather than the exception has been a bitter pill for me to swallow but imperative to retaining my sanity.

And Then There is Gaslighting

Another thing I’ve come to recognize as a tactic is what I call medical gaslighting. Gaslighting is a very effective but abusive form of diversion. In this case, a physician utilizes an established (though questionable) psychological diagnosis as a convenient way of absolving their non actions in your case. It also serves to stopgap any further digging into causal links and diverts attention away from the physicians own culpability. How many times have I been told that my symptoms are all in my head? Too many times to count. And since my symptoms don’t fit any known disease model, I must be suffering from a psychological malady.

This has now become a part of the DSM-5 lexicon of psychiatric diagnosis and poses further harm to people like myself and anyone whose symptoms cannot be easily pinpointed to any one specific disease. If anyone, who like myself has been previously diagnosed with a mental illness (depression, PTSD) these diagnoses further serve to de-legitimize the patient’s experience.

We need to be aware that even when we have the hard evidence of medical research to back up our claims, we will be challenged and possibly labeled. If we refuse to accept this knee jerk assessment or the drugs they will inevitably prescribe to treat our “real” issues we might find ourselves tagged with the non-compliant stamp.

I write this as a warning to everyone who finds themselves on this page. You might hit some very daunting, brick walls along this journey but know that you are not alone. One day we will be vindicated, this crime will be exposed, and Big Pharma and all colluding physicians and corrupt governmental agencies will be brought low.

For those who have been blessed with that one special physician who listens and learns, I am grateful to see that ethics still exist. It’s heartening to know that there are doctors out there who can put ego and material gain aside and remain open to their patient’s body awareness and desire for healing. Sadly, those doctors risk becoming medical heretics too, banned and derided by the more conventional experts, the same experts that employ the tactics listed above.

In the end, I know we will win and a big part of that victory comes from the massive amount of support and experience we find on our support pages. Thank you to all my fellow floxies. You are the vanguards of this battle and close to my heart.

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This post was published originally on Hormones Matter on October, 2015.

A Fragmented Balance: Life Post Cipro

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It has been seventeen months since I took three doses of Cipro and seventeen months of endless education of a degree in which I will never receive nor have ever been interested in to begin with. Pushed into an unfamiliar world due to a prescription of an antibiotic for an infection I did not even have.

I have never been one to like medications and because I have always been generally healthy, I have rarely ever needed them. A suspected urinary tract infection is what started this whole mess.  As it turned out, it was bladder irritation due to ice tea, not an infection. If I had listened to my gut I would not have swallowed the poison. Instead, I listened to my doctor. Why? Because I had been going to her for quite a long time, she knew me best; she is supposed to have my best interest at heart. In fact, she knew me so well that when she gave me the prescription she told me NOT to look at the side effects because I would choose not to take it. She knew I hated taking medication. It was JUST an antibiotic. That’s what she said and that is what I told myself.

Well Cipro is NOT just an antibiotic for some people. For some people it is poison; it is a game of Russian roulette with all chambers full.  I will spare you the details of the thirty plus symptoms it has caused and continues to cause, but know that my life has not been the same since and it never will be.  Even if my body recovers, it will never be the same. It can never give me the time back that I have not been able to spend with my children because I was laying in bed icing my hamstrings, or the hikes I have had to avoid because of the muscle loss; the time I have spent researching alternative ways to heal because the medical community has NO clue. Life will be different, from here on out.

I failed to mention the worst side effect of Cipro toxicity – how all of this can consume you, swallow you whole and spit you out in pieces. Fragments. Trying to fix yourself while being sick is not an easy task. It is an unfair task actually. It can make you angry; it can make your friends and your family angry. They don’t want to hear it and you are too tired to listen to yourself anymore.

I became silent.

During my silence an evolution occurred. It has started me on a new journey; a delicate balance of before, after, and mostly today. The object of my new journey is to gather the fragments each day as if they are new and polish them, repaint them and do my best to put them back together again. The object is to make a new art piece, a new me, post Cipro injury and to hope that people will admire the new me, but more importantly, that I will admire the new me, the stronger me, the less naive me. I think will call my art piece “Fragmented Balance”.

Participate in Research

Hormones Matter is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

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