Tendon pain

If you have ever been harmed by a medication, every day is an opportunity to raise awareness so that others do not have to suffer like you do. In response to the ever-growing need to educate people about adverse drug events, the American Society of Pharmacovigilance created National Adverse Drug Event Awareness Day, which is held annually on March 24. Adverse drug events are the fourth leading cause of death in the U.S. Annually, they account for one million emergency department visits, 2.2 million hospital admissions, 3.5 million doctor visits and a staggering $136 billion in health care costs.

In this article, I’d like to highlight the long-term struggle many of those in my position face, the factors behind it and what you can do to help yourself and others. 

The Beginning of My Story

In 2006, I was mis-prescribed an antibiotic called Levaquin for a suspected sinus infection; as it turned out, upon further testing, I didn’t even have an infection in the first place. I didn’t find this out until after I started the antibiotic. I trusted my health care provider when she said, “It couldn’t hurt to take an antibiotic in the meantime.” Turns out, it did.

Since then, I have suffered a multitude of adverse reactions that have been going on for 17 years and counting.

I’ve suffered over 30 tendon ruptures since 2006, requiring multiple, extensive surgeries. My last full ruptures were in 2021. In 2023, I tore my plantar fascia in my left foot and my posterior talofibular ligament in my right foot while walking in Boston; ironically, while I was there to talk about my experience with adverse drug events at The World Drug Safety Congress Americas conference.

Lingering Effects

In addition to tendon ruptures, I suffer from chronic pain every day in my muscles, tendons, ligaments and bones. Everyday activities are difficult and it is mentally and physically draining because no matter what I do, it hurts. All the time. 

I was also diagnosed with a neurodegenerative disease which has been linked to Levaquin. I agonize with brain fog and forgetfulness. Even worse, I deal with aphasia, which is the loss of ability to understand or express speech. I find it hard to comprehend and carry on conversations. It’s frustrating for me and the person I am trying to converse with. I’ll speak in short, sometimes incoherent sentences. Or I’ll have difficulty finding words. Sometimes I’ll substitute words that sound the same but don’t have the right meaning. Other times I will occasionally forget how to talk and it will come out as a sound. I worry that in the future I won’t be able to speak at all.

The adverse drug reactions I had from Levaquin changed my life dramatically. I went from having a cough to being disabled in the span of a month. Here we are 17 years later.

The burden of having surgeries, hospitalizations, reduced mobility, physical rehabilitation, speech therapy and exorbitant medical bills takes a toll, especially the loss of income while I am incapacitated. I’ll be completely honest: it takes a toll mentally as well. 

Many people think that once a medication is stopped, the adverse reactions stop. However, this is often a misconception. Although some people do recover, many suffer long-term and go through the same aftermath that I do; many with much worse consequences than mine, including death and severe disability. I’ve lost a lot of friends to this. Good people who ultimately lost their lives because of a pill, ear drop or IV. Unfortunately, the treatment is worse than the illness itself.

What Can You Do?

When all of this started in 2006, when it was suspected I had a sinus infection, I trusted my doctor and didn’t ask questions. I also trusted that the FDA performed due diligence on all drugs prescribed for patients. 

The problem is that fluoroquinolone toxicity can be invisible and/or misdiagnosed as something else. Patients are often dismissed by doctors who either don’t believe them or won’t take the time and effort necessary to make a proper diagnosis. The resulting frustration and doubts can take an even greater mental toll on patients, compounding their direct health problems with stress-related health problems. 

Currently, there are seven black box warnings on fluoroquinolone antibiotics, many of them thanks to the efforts of those in the fluoroquinolone patient advocacy community. Still, some doctors and patients don’t read them because they are long and written in complicated jargon. Despite efforts, nothing further has been done by the FDA to address the problem of fluoroquinolone-associated disability (FQAD)- a phrase coined by the FDA itself. Because of this, prescriptions are still being written for fluoroquinolones and more patients are being harmed.

So, what are the hopes for patients who may have already been adversely affected, as well as current and future patients who may be adversely affected due to improper diagnosis and/or treatment?

Here’s what you can do to advocate for yourself:

  • Ask questions of your doctors and other health professionals. As the patient, you have the largest stake in the outcome. You have the right to ask questions, regardless of how much training they’ve had or how hurried they seem in the exam room. You also have a right to a second opinion. Find someone who will listen and answer your questions.
  • Become educated. Please check out the link to my website for more info on black box warnings and fluoroquinolone toxicity, what to ask your doctor or medical professional, where to find help and support and the other resources listed below.
  • Get involved in advocacy. As a movement, we have accomplished a lot and can do more. Talk with others in the floxed community, find support and learn from each other’s experiences. While there has been local attention on FQAD, there needs to be more national and international attention. 
  • Speak up. Demand action from those who have the authority to change things. I always say: “Sometimes all it takes is for someone who went through it to be loud about it”. Be loud about it. Hold people accountable. People are counting on us.