The 25th National Prescription Drug Take Back Day takes place on Saturday, October 28—and this time around, I’ll be there.
The upcoming event will provide me with an opportunity to throw away hundreds of dollars’ worth of pharmaceutical products, all of them prescribed to and purchased by a family member named Max (not his real name) who can no longer use them. The combination of drugs prescribed to Max caused him to suffer what is accurately described by the Lown Institute’s 2019 landmark report as a “medication overload,” also known as America’s “other drug problem.”
As the report states:
“Medication overload is the use of multiple medications that pose a greater risk of harm than benefit. The more medications a person is taking, the greater their likelihood of experiencing harm, including serious, even life-threatening adverse drug events.”
The focus of the Lown report was older adults, but medication overload does not discriminate by age. The more drugs we have, the more risks we face—and these days, children and adults alike are facing an avalanche. The rise in pediatric polypharmacy and polypharmacy, across the board, for the population at large makes medication safety in the home more important than ever. Increasingly, medicine cabinets are packed with drugs that can harm individuals and beyond, leaching into our environment.
As a result, medication safety advice recommends consumers get rid of all unused and expired pharmaceutical products within their home. In the past, like many other consumers, I would just throw away unused prescription drugs in with other household trash. All of the products that I threw in the trash were psychiatric drugs that I could no longer use because they induced adverse reactions including: tardive dyskinesia, severe-parkinsonslike syndrome, suicidal thinking, hand tremors, rapid weight gain, high blood pressure, chronic fatigue and hypothyroidism. I was unaware that when side effects occur, patients are supposed to report adverse reactions to the FDA.
The psychiatric drugs that I threw out were prescribed to me after I suffered an acute manic episode from toxic encephalopathy that was misdiagnosed as bipolar disorder—an ordeal I described in my piece last year for Mad in America, ”Connecting the Dots: My Toxic Workplace Made Me ‘Mentally Ill.’” Before being prescribed psychiatric drugs at the age of 33, I had no prior history of medical conditions requiring the use of prescription drugs to maintain my physical or mental health.
The first round of psychiatric drugs I threw out in March of 1996 cost me $350. As a frugal-minded individual—because these products did not work and even caused me harm—I assumed that I could return them to the local drug store where I purchased them and at the very least receive a partial refund. That seemed pretty fair, as our grocery store right down the street would always give refunds to patrons who had issues with any consumable items that we sold. That is the policy I thought all businesses had.
Much to my surprise, I learned that pharmacies have a no-refund policy on prescription drugs, and I was stuck with expensive products that did not help me, but instead hurt me. Back then, $350 was more than I spent on groceries for a month. Although I knew these products were dangerous, it did not occur to me that adding them to household trash could cause harm to other humans or animals. It was not until many years later, when I started attending meetings at my local coalition of Safe Kids Worldwide, that I became aware of the importance of proper drug disposal and a drug take-back initiative that had just been launched.
Public health, and the push to get rid of drugs safely
Household pharmaceutical waste disposal is now recognized as a global problem. Greater public awareness of take-back programs, along with understanding the multiple reasons behind medication waste, is needed to help reduce this problem.
Here in the US, the fight against the opioid epidemic was a driving force in our government agencies taking action to bend the curve on overdose deaths by developing sustainable and annual take-back programs. According to the Centers for Disease Control and Prevention, enough prescription painkillers were prescribed in 2010 to medicate every American adult around-the-clock for one month. That same year, the Drug Enforcement Administration (DEA) launched its first-ever nationwide prescription drug take back day. Four days after the event, Congress passed legislation amending the Controlled Substances Act to allow the DEA to develop a permanent program that would provide consumers with a responsible means of ridding their home of unwanted pharmaceuticals at year-round collection sites and annual events.
The DEA now hosts National Prescription Drug Take Back Day during the last Saturday of the months of April and October. During this nationwide effort, up to 5000 law enforcement agencies collect hundreds of tons of pharmaceutical household waste within just a few hours.
Our law enforcement agencies are dedicated to this initiative because it addresses vital public safety and public health issues. Prescription drugs are highly susceptible to diversion, misuse, abuse and accidental or intentional overdose. Flushing unwanted pharmaceuticals down the drain is strongly discouraged, as studies have found they can pollute our waterways and unintentionally expose us to the hazardous chemicals in these products. Unused prescriptions constitute wasted healthcare resources and present numerous health risks.
Since its inception, consumers cleaning out their medicine cabinets have tossed out 8,650 tons of pharmaceutical products at National Prescription Drug Take Back events. Last October, in the State of Florida alone, thousands of law enforcement officers helped to collect nearly 650,000 pounds of unwanted prescription drugs, which is more weight than nearly three space shuttles (165,000 pounds each).
As these numbers indicate, the DEA’s drug take-back initiative has been successful in making our communities safer and healthier by eliminating safety hazards from the home environment. But the massive amount of pharmaceutical household waste being collected by our public servants does not even include pharmaceutical products being disposed of at year-round collection sites, or those being disposed of in the trash, or down the drain.
Tallying this all up with medications being thrown away at hospitals, nursing homes, cancer treatment centers, and other facilities, the result is an astronomical amount of money being spent on pharmaceutical products that end up as waste products: billions of dollars in overspending in the healthcare system, a cost that gets passed along to insurance companies, patients, and taxpayers, and billions in profit for the pharmaceutical industry.
In my opinion, the success of Take Back Day alone is another strong indication that the companies manufacturing these products are not socially responsible businesses and are not abiding by fair business practices. There are, to put it simply, too many drugs in people’s medicine cabinets — putting too many people at risk.
Dangers of the overload: a family member’s story
Take Max, for one.
With his permission, I shared part of his experiences with MIA readers in March. This time, Max and I wanted to provide additional considerations involving the obstacles consumers face and the financial burdens they incur after suffering a medication overload-induced disability.
For most of his life, Max was physically fit and did not have any medical conditions requiring the daily use of prescription drugs. But the overload happened incrementally. Little by little, he went from using the over-the-counter allergy medications Zyrtec and Flonase to being prescribed the blood pressure medication Telmisartan by his primary care physician, who also advised him to take a probiotic every day because he frequently prescribed Max antibiotics. A second blood pressure medication, Amlodipine Besylate, was added by his cardiologist; then he was prescribed the gout medication Allopurinol from his urologist; then Ketoconazole and Betamethasone Dipropionate, creams from his dermatologist for rashes on his neck; then the sinus sprays Fluticasone Propionate and Azelastine, along with monthly allergy injections from his allergist.
Last but not least came the drug that proved toxic: A short course of the fluoroquinolone antibiotic levofloxacin. prescribed to Max last fall for a cold. Along with his daily cocktail of prescription drugs, it induced adverse reactions that led to a cascade of additional prescriptions, causing a full-blown neurotoxic reaction from “medication overload.”
Neurotoxicity is, in fact, a well-known side effect of fluoroquinolone antibiotics—known by the brand names Cipro, Factive, Levaquin, and others. In 2016, the FDA enhanced black box warnings about the association of fluoroquinolones with disabling side effects involving tendons, muscles, joints, aortic aneurysms, nerves, and the central nervous system. Despite the enhanced warnings from the FDA, prescribers are unaware of the adverse reactions and fail to recognize their occurrence.
The US Food and Drug Administration has consistently released warnings about the drug levofloxacin and other popular antibiotics like Cipro. Like many psychiatric drugs that warn of serious adverse reactions and have black box warnings, these drugs continue to remain on the market as many argue that health benefits for some out way the risk for others.
But at the time, no one told us any of this. All we knew was Max’s condition kept spiraling down. What started out as tingling sensations in his face and in his hands grew worse and worse with each additional medication he was prescribed. The tingling sensations continued, along with nervous and jittery feelings—and then his hands started to itch like crazy. When his blood pressure shot up to a high of 210/120 during the middle of the night, Max went to our local hospital’s emergency department, where he was diagnosed with an allergic reaction and prescribed Benadryl and Pepcid.
The next day he went in for his monthly allergy shot and discussed his odd symptoms with his allergist, who advised Max to continue using sinus sprays twice a day, along with Zyrtec. His doctor reassured Max that his medications had nothing to do with the sudden onset of these new symptoms. That night Max’s blood pressure shot up again, and it was like a bomb had gone off in his body. Max described the reaction as if his whole body was lit on fire, especially in his hands and feet.
The sudden manifestation was extremely painful and severe, erupting overnight to an unbearable burning sensation all over his entire body, as damage to his nervous system quickly set in. He made another trip to the emergency department where he was told he probably had a pinched nerve, and after administering an IV with strong pain medication, he was sent home with a prescription for Hydrocodone.
By morning, the condition severely impaired his fine motor skills to the point he couldn’t even tie his shoes or hold a pen. The pain in his feet was so excruciating he could only tolerate wearing open-toed sandals. He had a follow-up visit with his primary care physician, who ordered a battery of tests, referred him to physical therapy and other specialists—including a neurologist and a hematologist—and gave him prescriptions for the anticonvulsant Gabapentin and an antidepressant, Trazodone.
From the onset of his symptoms, it was obvious to me that Max’s spontaneous illness was caused by prescription drugs and his condition should be considered as iatrogenic, which literally means “illness caused by a medical treatment.” But his doctors failed to comprehend this. They still do. Unfortunately, the warnings on pharmaceutical products are not well known among health care professionals, and convincing the medical professionals involved in his treatment that prescription drugs caused his injury continues to be challenging.
The doctors who refuse to acknowledge harms
Because the adverse drug reaction he experienced is considered rare, the physicians treating him seem to be in disbelief that it could ever happen to anyone at all. Instead, they have suggested it was just a coincidence his illness took place shortly after taking a fluoroquinolone, and they maintain his symptoms are from “idiopathic” conditions. The term idiopathic literally means “a disease of its own kind” and is used by professionals to describe medical problems with no identifiable cause.
In other words, his doctors would like Max to accept this way of thinking: Even though several medications he was taking, including one with a black box warning, are known to cause painful neuropathy, it rarely happens to anyone, so it did not happen to him; it is safe for him to continue the use of all of his prescription medications; the pain he is experiencing is the result of suffering from an idiopathic condition; and while doctors don’t know what causes this idiopathic condition, they do have drugs to treat it.
The problem is, those drugs can worsen the mysterious idiopathic condition he already is dealing with—or they can cause him to suffer new medical conditions that will require additional treatment.
Max needed to deprescribe from what he was already taking. Instead his prescribers, insisting that his condition had nothing to do with the medications he took, advised him to ignore the warnings from the manufacturers and continue taking prescription drugs that list neuropathy as an adverse reaction. Beyond that, they added more and more prescription drugs to his medication regime, causing his symptoms to worsen. So the medication overload continued.
Despite being in constant pain and worsening symptoms, Max listened to the advice of his prescribers and kept pushing himself beyond his physical limitations to continue his employment in a career that he enjoys and is vested in. He continued to experience unbearable symptoms, including excruciating flare-ups of burning sensations in his hands, feet, back, and face; weakness and rapid muscle atrophy in his arms and legs; and insomnia.
Through all this, he continued to seek medical assistance at our local hospital’s emergency department, totaling 11 visits within a two-and-a-half-month period. At one point, his condition was so severe I had to beg the doctor to give him an IV and please consult the hospital pharmacist, who finally confirmed his condition was medication-induced. On Max’s behalf, I ended up filing a complaint with the hospital against the prescribers for failing to consider adverse reactions to the medications, especially since the type of reaction he had is considered life-threatening and the manufacturers warn of this reaction.
Horror stories like Max’s are not rare.
Although health care professionals and pharmacists are strongly encouraged, based on ethical and professional responsibility, to report suspected adverse drug events to the FDA’s MedWatch program, Max’s situation is another example of how adverse events go under-recognized and under-reported.
After the complaint was filed with the hospital, Max was offered services through their coordinated care program to help him navigate the healthcare system and access the resources available to him. Through this program, I requested all of his medications be reviewed by a pharmacologist who, after looking into their side effects, stated the combination of prescriptions Max was taking placed him at a higher risk of suffering fluoroquinolone-induced toxic neuropathy.
He has since gone against the advice of his prescribers and tapered off of the medications that warn of neuropathy. He also stopped working and applied for disability so that he put one hundred percent of his time, focus, and energy into educating himself on his health conditions and implementing holistic and nutritional therapies to help him heal.
Tests later performed by two neurologists finally confirmed Max suffers from demyelinating polyneuropathy, which is a painful condition caused by damage to the fat-based protective covering on nerves called the myelin sheath.
Max is now left with a small pile of unused prescription drugs that need to be disposed of. Some of the prescription drugs were never even opened but cannot be returned to the drugstore where they were purchased thanks to their no-refund policy. I did report Max’s adverse event to Camber Pharmaceuticals Inc., the manufacturer of the levofloxacin that he took. Several months later, an employee from the factory in India where the drug was made told me they did not have any other reported adverse events, had found no manufacturing error on their part, and their investigation was closed. I asked for a copy of the investigation but was told they do not provide reports to consumers.
I tried to find an attorney. Although dozens of attorneys advertise on their website that they have expertise with handling Levaquin (levofloxacin) lawsuits—even referring to themselves as “Levaquin lawyers,” a “Fluoroquinolone Lawsuit Attorney,” or “Antibiotic Nerve Damage Lawsuits Lawyer” and encouraging consumers to call consult their firm “if you have taken levofloxacin and believe it harmed you”—none of the law firms I contacted on Max’s behalf would accept his case. The enhanced warnings, described above, are the reason why attorneys are no longer accepting cases.
The rhythm and blues of being floxed
As it turns out, Max is not alone. Shortly after his story was published on MIA, R&B singer Bobby Caldwell passed away from health problems associated with adverse reactions to levofloxacin, the same fluoroquinolone antibiotic that injured Max. According to Bobby’s wife Mary, in January of 2017, while Bobby was preparing for a tour in Japan, he came down with a cold and visited an urgent-care clinic. Just like Max, Bobby received a prescription for levofloxacin and cough medicine. After taking the antibiotic for seven days, Bobby experienced severe pain in his Achilles and was later diagnosed with bilateral tendon ruptures and peripheral neuropathy.
Mary quickly suspected the prescription drug levofloxacin was to blame for Bobby’s sudden medical problems and researched the drug online. She found a long list of warnings that included nerve damage, dangerous blood-sugar fluctuations, psychosis, aortic aneurysms, as well as tendon ruptures, which is one of the odd adverse reactions the FDA warned fluoroquinolone consumers about back in 2008. In mid-March, Mary announced Bobby’s passing with this tweet:
“Bobby passed away here at home. I held him tight in my arms as he left us. I am forever heartbroken. Thanks to all of you for your many prayers over the years. He had been ‘FLOXED,’ it took his health over the last 6 years and 2 months. Rest with God, my Love.” -Mary Caldwell
Mary’s tweet soon went viral with many of Bobby’s fans, including me, wanting to know what “floxed” meant. Mary later shared details during an online interview regarding the harm fluoroquinolones exacted on Bobby. She hoped that sharing his story would help others.
As much as Max and I had already learned about fluoroquinolone toxicity, Mary’s tweet was the first time I had ever heard of the term “floxed.” From online searches, I was able to locate a wealth of information that has since helped Max learn more about his condition and ways to help. It is information that without seeing Mary’s tweet, I otherwise would not have found.
Thousands of people around the world blame fluoroquinolones for debilitating side effects that have forever changed their life. The many who are sharing their stories online are helping others, as far too many medical professionals not only lack the knowledge to help their patients who suffer adverse events—they are misdiagnosing them with idiopathic conditions and prescribing medications that can worsen their condition.
Dr. Mark Ghalili is among the growing number of doctors who are now helping to educate the medical community by sharing his own story of being “floxed.” After taking the drug Cipro, Ghalili soon suffered from complete muscle wasting, burning neuropathy, seizures, brain fog, vertigo, blurry vision, and tendon tears in his legs.
After diagnosing himself, Ghalili said it was difficult for him to get help.
“Most of my physician colleagues had actually thought I was making this up or fabricating the story,” Ghalili said in an interview with CBS Los Angeles. “They had never heard of this condition occurring before.”
When he became confined to a wheelchair, crippled and unable to walk, Ghalili turned to alternative and regenerative therapies—as the traditional medical doctors had no answer for him. Nor did they even believe him. After his successful use of these therapies, Ghalili opened a clinic in Los Angeles to help others who have suffered fluoroquinolone-induced disabilities.
Andrew Ordon, a physician from the TV show “The Doctors,” became one of Ghalili’s patients after he also had a bad reaction to fluoroquinolones and developed Achilles tendinitis. The customized therapy Ordon received treatment at Regenerative Medicine LA improved his condition, and on the show he stated that he had heard fluoroquinolones could cause nerve and tendon damage but didn’t believe it until he experienced the painful condition himself. He also stated that he will never take fluoroquinolone antibiotics again and he will never prescribe them to his patients.
Unfortunately, witnessing the suffering of others is not convincing enough to prescribers that adverse reactions really do occur; it takes experiencing them firsthand to change the minds of prescribers. From my personal experience, this is the same problem psychiatric patients have. Psychiatrists are ignorant to adverse reactions, so they turn a blind eye and continue to prescribe—and some psychiatric consumers, under court-ordered treatment, have no choice and are forced to take drugs that are causing unbearable adverse reactions.
As soon as Max found out about Ghalili’s clinic and heard Ordon’s testimony, he looked into it for himself. Located in Los Angeles, it’s expensive: “The estimated cost of the five-day treatment program at Regenerative Medicine LA starts at $9,900, a cost (before travel) that is much too expensive for Max at this point.” Another option Max looked into was a local program that had an upfront cost of $6,700—still not an option he felt comfortable investing in. After all that he’s been through, he’s on disability, and his earnings are now 50 percent less than when he was working full time. Max was very fortunate to be vested in a job that has provided him security and disability insurance, but still, costs add up. His copayments alone for emergency department visits, office visits, lab work, prescriptions and diagnostic testing add up to close to $5000; his insurance company paid out over $50,000 for those services.
Despite all of that—all of the expensive testing and medical examinations, all of the providers involved, all of the time in hospitals—no doctor ever recognized Max’s condition as drug-induced. It was only after I advocated on his behalf and presented research that his doctors agreed. Still, they offered no methods of helping him, other than adding more drugs to the overload. Basically, patients who suffer adverse reactions from prescription drugs are on their own.
Max is doing better these days. His condition is slowly improving, but only because he has become an educated consumer. He has taken his health into his own hands and is learning everything he can by watching online lectures from the doctors who are speaking out and educating patients. My advice to him is to stay the course. As I found out from dealing with my own health issues, slow and steady wins this race.
But for so many others out there, the risks of medication overload continue to mount, the potential harms piling up along with the mountain of drugs in their cabinets. And yet most people have no idea. Most people—prescribers and consumers alike—fail to realize how quickly an adverse drug reaction can negatively impact not only a person’s health but also their finances.
Of that, Max is living proof.
(Consumers can learn more about National Prescription Drug Take Back Day and find participating locations by visiting DEA.gov/TakeBackDay.)
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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