Patient with fluoroquinolone toxicity

Is there a cure for fluoroquinolone toxicity?

At this time, there is no cure or blanket treatment for fluoroquinolone toxicity. However, symptoms can be managed. Research is being conducted and it is our hope that will lead to treatments and a cure.

How does fluoroquinolone toxicity affect the musculoskeletal system?

Patients with fluoroquinolone toxicity often experience pain and inflammation in tendons, ligaments, and muscles, as well as pain in the joints. Fluoroquinolones may also cause muscle atrophy, spinal disk degeneration, and peripheral neuropathy (nerve damage which may be permanent).

How does fluoroquinolone toxicity affect the nervous systems?

Fluoroquinolones can affect all three nervous systems:

Central nervous system- The brain and spinal cord.
When fluoroquinolones affect your central nervous system, many symptoms may occur, including, but not limited to:

  • Fatigue
  • Depression
  • Anxiety/panic
  • Seizures
  • Brain fog
  • Insomnia
  • Impaired memory
  • Aphasia
  • Suicidal ideation

Peripheral nervous system- Nerves that connect the brain and spinal cord to the rest of the body, and gives skin and muscles the signals needed for sensation and movement.
When fluoroquinolones affect your peripheral nervous system, many symptoms may occur, including, but not limited to:

  • Numbness
  • Burning
  • Pain
  • Tingling
  • Stinging
  • Weakness
  • Tinnitus
  • Vertigo
  • Visual disturbances

Autonomic nervous system- The autonomic nervous system regulates many of the body’s functions that happen almost automatically: heart rate, blood pressure, feeling hot or cold, bladder and bowel functions, release of adrenalin, breathing, sweating, and muscle movement. Fluoroquinolones can affect nerve signals and can lead to a wide variety of symptoms, including, but not limited to:

  • Persistent gastric problems
  • Swallowing deficit
  • Palpitations/arrhythmia
  • High/low blood pressure
  • Dysautonomia
  • POTS (Postural Orthostatic Tachycardia Syndrome)

The symptoms may come on suddenly or may come and go, and can also can be present in other diseases, so fluoroquinolone related nervous system disorders is often difficult to diagnose.

How should I prepare for a doctor’s appointment?

Your doctor will likely run tests but your history could provide valuable direction.

  • Keep a journal of your symptoms
  • Enlist a friend of family to accompany you to your appointment.
  • Be specific about your symptoms. Your doctor will gain valuable insight when using specific terms such as “I am feeling burning and tingling sensations” rather than “I feel pain”.
  • Bring a medication list Hyperlink to Resources>Print & Download page where Medication List document is located
  • Bring Doctor Preparation Form Hyperlink to Resources>Print & Download page where Doctor Prep Form is located.
  • Bring medical records including MRIs, X-rays, or other testing.
  • Request a brief summary of the appointment. Surveys have shown that patients cannot always remember the bulk of the appointment. Take notes during the appointment and during the summary to make sure all points were covered.

How quickly does fluoroquinolone toxicity develop?

It can develop within hours all the way up to months or years.

 

Caregiver of someone with fluoroquinolone toxicity:

How do I transition into a caregiver role?

Moving into the role of caregiver can be difficult and relationships may shift. Patients with fluoroquinolone toxicity may not be able to do the things they once did because of pain and fatigue, leaving the caregiver to take on additional responsibilities. Remember that the person with fluoroquinolone toxicity is not at fault for what has happened to them and they may feel like their role has altered because of their fluoroquinolone induced disabilities.

In order to take on extra responsibilities, it may be necessary to delegate other responsibilities to other family members. Those with fluoroquinolone toxicity may have good days and bad days. Some people may feel up to helping out when they have a “good” day in order to feel “normal”. Other days, it may take every ounce of strength just to survive. Communication on both sides is important in transitioning to a caregiver role.

As a caregiver, how do I handle the unpredictability of fluoroquinolone toxicity?

Fluoroquinolone toxicity can be unpredictable and cause “flares” in symptoms which could disrupt your life. Due to the unpredictability, you may need to adjust your role and responsibilities at home and it is important to find ways to cope. Contingency plans play an important role.

  • Have groceries delivered if you can’t make it to the store.
  • Have a babysitter on call in case of an emergency.
  • Establish a car pool so children can continue normal routines.
  • Keep a list of medications, supplements, test results, physician contacts.
  • Educate yourself about fluoroquinolone toxicity to better understand the disorder and what could trigger symptoms.

How can I prepare for emergencies?

Adverse reactions could be life threatening and be unpredictable. Keep a binder with the following:

  • Identification
  • Insurance information
  • Living will, if applicable
  • List of allergies
  • List of surgeries and/or procedures
  • Emergency contacts
  • List of medications, supplements, etc

Keeping a “go bag” can also be helpful:

  • Change of clothes
  • Toiletries
  • Device chargers
  • Books/music/hobby materials

How can I manage caregiving long distance?

Sometimes a loved one can suffer from fluoroquinolone toxicity but may not live close by, and that can create challenges.

As a long distance caregiver, it is helpful to have:

  • Access to your loved one’s records
  • Contact information of doctors
  • Contact information of neighbors or friends

Self care

As a caregiver, you might put your own health and well-being aside to care for your loved one, but it is important to take care of yourself so you don’t burn out. Take time to enjoy an activity or hobby to relieve the stress and take care of your own needs.

 

For Patients and Caregivers

How can traveling be made easier?

  • Choose your destination carefully. Climate change can negatively affect someone with Fluoroquinolone Toxicity. The altitude in airplane travel can also negatively affect someone who is chronically ill so make sure you get medical clearance.
  • When buying your tickets, make sure the dates are flexible. You never know how you will feel from day to day. Check the Terms and Conditions, and the fine print for travel insurance. Some pre-existing conditions may be excluded.
  • Check with the airline, train station, or bus station to see if they have a Meet & Assist program. A representative of the airline , train station, or bus station will meet your flight, train, or bus, provide a wheelchair, and wheel you where you need to go. You will need to fill out a medical form called a Passenger Medical Information Form (MEDIF). These are available through travel agencies and through the medical department of airlines and transportation stations. Also have your doctor write up a letter for the airline if you require extra fluids and medications on board.
  • Schedule days of rest into your trip. Overdoing it one day can mean feeling poorly the next day and longer.
  • Take the original pill bottles with instructions with you. Airlines generally don’t like when pills are in pill boxes. They need to be able to identify the medications or they will have to dispose of them.
  • Keep a list of your medications and doctors, and inquire about what medical services are available at your destination.
  • If you’re traveling internationally, Google-translate a brief history of your medical issues into the language of your destination.
  • Pack snacks or prepared meals that suit your dietary restrictions. Many people with Fluoroquinolone Toxicity have food sensitivities. When you are traveling, it can be challenging eating meals on time for your medications.
  • If you require assistance with feeding, lifting, or medication administration, you will need an escort or travel companion. Airline hostesses cannot assist passengers in these matters.
  • If you are visiting an attraction during your travels, check ahead of time to see what is handicapped accessible and whether canes with portable seating is permitted. Keep a copy of the letter from your doctor in case you run into a problem with an employee that may not understand.

How do I explain fluoroquinolone toxicity to others?

It is difficult for people to understand that an antibiotic can have severe adverse reactions which cause injury and disability. But unfortunately they do.

  • Fluoroquinolone toxicity is real. It is documented in research and by the FDA.
  • Fluoroquinolone toxicity can be a chronic illness. Some people recover; some don’t.
  • It is not contagious.
  • Fluoroquinolone toxicity affects many systems including musculoskeletal, central nervous system, autonomic nervous system, and peripheral nervous system. What affects one person may not affect someone else and not everyone who takes a fluoroquinolone will suffer adverse reactions.
  • Fluoroquinolone toxicity is unpredictable. Some people suffer symptoms but can go about their daily routine; for others, it takes effort just to get out of bed. There is no predicting how someone will feel day to day.