Who Knows About Fluoroquinolone Toxicity?

There are people who should know about the dangers of fluoroquinolone antibiotics.

The FDA should know about the dangers of all the drugs on the market. There should be people at the FDA who have read the 200+ articles I have HERE about the damage that fluoroquinolones do to cells. And there should be people at the FDA who track adverse drug reactions and therefore realize that adverse reactions to fluoroquinolones involve multi-system, often chronic, illness and disability. There should be people at the FDA who realize that a 43 page warning label for Cipro/ciprofloxacin is an indication that it’s a dangerous drug, and there should be people at the FDA who push for restrictions on drugs that carry black-box warnings–the most severe warnings possible before a drug is removed from the market. It’s the JOB of the FDA to regulate drugs and to protect the public from drugs whose benefits don’t outweigh their risks. The powers-that-be at the FDA should be working toward more prudent and appropriate use of fluoroquinolones, because it’s their job (and duty, and mission, and moral obligation) to do so.

Doctors should know about the dangers of fluoroquinolones because they prescribe them, and it’s not too much to ask that doctors know the side-effects of the drugs they prescribe. We, as patients, also ask that our doctors recognize adverse drug reactions when they see them. It would be even nicer if they could cure us and reverse adverse drug reactions, but maybe that’s asking too much. Some knowledge about the dangers of the drugs they prescribe isn’t too much to ask for though.

Pharmacists should realize that fluoroquinolones are dangerous drugs. They study drugs much more extensively than doctors do, and they’re the last line of defense before a patient receives a prescription, so it’s expected that they should know about the risks associated with all the drugs they dispense.

It is expected that all of these people will not only know about the dangers of the drugs they regulate, prescribe or dispense, but also that they will protect patients/consumers from using them inappropriately and getting hurt by them unnecessarily.

I don’t think that it’s too much to expect, and I think that some anger at the FDA, doctors and pharmacists is appropriate given their collective failure to minimize the damage done by fluoroquinolones.

There’s a problem with these assertions though. Even though the FDA, doctors and pharmacists SHOULD know about the dangers of fluoroquinolones and about fluoroquinolone toxicity, I don’t think they do.

I don’t think that they actually realize the severity of adverse reactions to fluoroquinolones. I don’t think that they realize that people who were previously healthy can have all aspects of their health and lives ruined by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or any of the other fluoroquinolones.

It is too bizarre, and too unheard of, that a class of ANTIBIOTICS could cause multi-symptom, chronic, disabling illness. Fluoroquinolones are antibiotics, and even though medical professionals and regulators should know better, many believe all antibiotics are benign drugs.

As frustrating as it is for those of us who know first-hand how terrifying and destructive fluoroquinolone toxicity is, I think that it will behove us to recognize that, unfortunately, most doctors, pharmacists and even FDA personnel, don’t realize how dangerous fluoroquinolones are, or how devastating fluoroquinolone toxicity is to its victims.

I know of several physicians, pharmacists and scientists who have been “floxed.” They were just as blind-sided by their adverse reaction as anyone else. They didn’t know how severe and life-altering the effects of fluoroquinolones could be until they were personally affected by them.

It can be difficult for those who have experienced fluoroquinolone toxicity to recognize, but many medical personnel truly didn’t know about fluoroquinolone toxicity. Doctors and pharmacists weren’t taught about fluoroquinolone toxicity in medical or pharmacy school, and the reactions are bizarre enough that they’re difficult to recognize in practice, so they don’t see it until it happens to them.

Unfortunately, I don’t think that the people at the FDA know either.

While listening to the FDA’s Antimicrobial Drugs Advisory Committee at the November 5, 2015 meeting to, “discuss the risks and benefits of the systemic fluoroquinolone antibacterial drugs for the treatment of acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis in patients who have chronic obstructive pulmonary disease, and uncomplicated urinary tract infections in the context of available safety information and the treatment effect of antibacterial drugs in these clinical conditions,” I got the distinct feeling that the FDA committee members didn’t realize the extent of the damage that fluoroquinolones do. Even though their meeting brief noted that fluoroquinolones can cause disability, the committee members still seemed surprised by the severity of the adverse reactions described by victims of fluoroquinolones.

Though they seemed to hear those who testified, and they listened respectfully, I think that stories such as the following were a surprise to the committee members:

B.C (Before Cipro):  I was a hiker, biker (rode my bicycle across the US carrying 50 pounds), hockey player, horseback rider, swimmer; thin, fit, worked in moderately physically demanding profession, no known health issues other than a simple UTI.

A.C:  (After Cipro):  Five days and 10 pills later:  crippled with unrelenting pain, unable to walk, sit, stand, use arms, fingers, or type due to severe body-wide tendon pain; hallucinations, tinnitus;  central, autonomic, and peripheral neurological issues;  severe neuromuscular damage; vision and hearing issues;  severe endocrine abnormalities (glucose, thyroid); severe cardiac issues;  autoimmune issues.

A.C. Permanently :  Five years later:  Still suffering and disabled; can’t work, lost profession, lost financial security, lost marriage, lost hope for any reasonable quality of life.   Denied by medical profession due to no known diagnostic biomarkers; denied legal recourse due to generic; denied SSDI due to the first two and denial by the FDA and everyone involved, and ultimately, will be denied as the most probable cause of my death.

I don’t think that the FDA committee members were aware that fluoroquinolones could do that much damage. How could an antibiotic do that much damage? It’s unheard of, but it’s still true–fluoroquinolones can, and do, an immense amount of harm.

The FDA’s Antimicrobial Drugs Advisory Committee now knows about the harm that fluoroquinolones inflict. They sat through our testimony and they can no longer claim ignorance. They were told, in no uncertain terms, about the devastation that fluoroquinolones have brought to people’s lives. They acknowledged that the warning labels currently on fluoroquinolones do not appropriately convey the risks involved with taking these dangerous drugs to treat simple infections.

The FDA needs to convey to doctors, pharmacists, and the public, that fluoroquinolones are dangerous drugs with severe side-effects, and that it’s not appropriate to use them for treatment of simple infections. If the FDA updates the warning labels on fluoroquinolones to note that fluoroquinolone associated disability is a possible effect, maybe more doctors and pharmacists will recognize that they should not only avoid these drugs themselves, but that they should avoid them for use in patients too.

We, as victims of fluoroquinolones and patient advocates, are screaming loudly about the devastating effects of fluoroquinolones. There have been hundreds of news stories over the last year about the dangers of fluoroquinolones. The November 5th FDA committee hearing was a resounding success. The term “flox” is becoming recognized, and people who have not been “floxed” themselves are recognizing what it means when someone says, “I am bed-bound and I lost my job because I got floxed.” The word is getting out and those doctors and pharmacists who are paying attention are recognizing that fluoroquinolones are consequential drugs. At some point we will be able to say, “you should have known” when confronting a doctor or pharmacist about a fluoroquinolone toxicity reaction. Right now though, many doctors, pharmacists and even FDA personnel, don’t know how horrible fluoroquinolone toxicity reactions can be.

Our “bottom-up” efforts are making a difference, but some “top-down” efforts are sorely needed too. The FDA must thoroughly communicate the dangers of fluoroquinolones to doctors, pharmacists and patients.

Ignorance is not bliss when millions of fluoroquinolone prescriptions are being handed out, and thousands of people are being devastated by these dangerous drugs. Everyone involved in the medical system, including patients, needs to be informed about the dangers of these drugs. Currently, they are not. Currently, they don’t know about fluoroquinolone toxicity. Change is coming though. The more patients are listened to, the faster change will come.