LAKE JACKSON — For Glennece Beckett, the nightmare started in June 2014 with a urinary tract infection. She didn’t think much of it, since UTIs are so common, and her doctor was similarly unconcerned.
She received a prescription for ciprofloxacin, a fluoroquinolone antibiotic often used to treat such infections, and trusted that the seven-day course of pills would clear up her problem.
“You don’t think about it,” she said. “Your doctor gives you a prescription, you go and get it filled, you take it.”
After a week of pills, the infection faded, but other problems soon took its place. Burning pain filled the joints of her hands, arms and elbows. The joints in her feet and ankles began to swell, creating throbbing pain when she tried to walk. Her stride turned into a hobble. For an active woman involved in biking, running and horseback riding, it was a serious liability.
Eventually, Beckett went to a Houston orthopedist to find out what was wrong. He asked if she had taken Cipro, a brand name for ciprofloxacin.
When Beckett said yes, he told her ciprofloxacin can cause tendons to swell or tear, especially the Achilles’ tendon in the heel. It also can cause diarrhea, dizziness, drowsiness, headache, abdominal pain, vomiting, blurred vision, anxiety, insomnia, nightmares and rash.
Beckett didn’t know it yet, but the rest of the side effects were on their way. By September, she had casts on both legs. By October, she spent most of her time in a wheelchair.
“Things just deteriorated from there. … I went through a year ripping tendons,” she said. “If I sat up for more than 30 minutes, the tendons that hold the muscles to the backbone would shred and rip. I turned over in bed and the tendon ruptured in my right thigh and the muscles ripped off the bone.”
By December, Beckett was bedridden and in constant pain. The slightest movement grated on her swollen joints and tore her damaged tendons.
She couldn’t move from her bed or even sit up. Constant migraines added to her misery, vicious headaches coupled with nausea and dizziness that lasted for days.
“She couldn’t even put a sentence together or communicate her needs, brush her teeth or feed herself,” said Hannah, Beckett’s daughter and caretaker.
“She was in excruciating pain. Muscles were spasming, tendons and muscles were tearing spontaneously, (she had) severe migraine headaches 24/7, intense panic attacks. … This lasted intensely for the next 15 months.”
As her condition deteriorated, Beckett made the round of Houston physicians, looking for a cure.
They found a host of neurocognitive issues and heart damage as well as the tendonitis. As the tests went on, her vision faded until she was legally blind in her right eye. The left eye retained partial vision, but doctors say that will fade within a few months.
Doctors initially diagnosed Beckett with Alzheimer’s, vascular dementia and Huntington’s disease, but ultimately found to have none of them.
When she told doctors her condition was caused by Cipro, many refused to believe her. Cipro is such a common antibiotic, they told her, and they use it for everything. It couldn’t cause these issues.
They branded her a hypochondriac and an exaggerator, telling her she must be making up some of her symptoms.
“How do you fabricate MRIs showing that your tendons are ruptured?” she said. “How do you fabricate the fact that my vision is gone? How do you make these things up?”
By 2015, Beckett still had no answers, and she was nowhere near the road to recovery. She began to experience a feeling she described as waves of boiling water running up and down her body, a sensation of being constantly scalded. Muscles spasms turned into episodes of shaking and twitching, then morphed into seizures that landed her in the emergency room.
Beckett began to have panic attacks and terrifying dreams, catapulting from her troubled sleep into a waking nightmare of shrieking joints, burning skin and tearing tendons.
“There were months and months I basically screamed 24/7,” she said. “It was like a chainsaw peeling the skin and muscles off my feet and legs. It was unbearable, excruciating pain for the sheet to touch them, even the air to touch them.”
In March, Beckett started spending a week out of every month at the Progressive Health Care Center in Austin, where nurses gave her three to four IVs a week.
The other three weeks each month, a nurse came to Beckett’s home in Lake Jackson to administer the IVs.
The IVs contained lutathione, a substance produced naturally by the liver, used to treat drug poisoning, boost damaged immune systems and treat diseases such as Alzheimer’s and Parkinson’s. The treatment helped, but she still was in pain.
‘A VERY DARK TIME’
“There was a period last October where my pastor came over. It was a very dark time. I said if I was a dog, you would put me down and call it humane,” Beckett said. “If I was a horse, you’d shoot me in the head and say it was mercy.”
Last December, Beckett’s husband called the Mayo Clinic, a world-renowned nonprofit medical system and research group. When they learned about the seriousness of Beckett’s condition, they invited her to come in immediately.
Since it was two days before Christmas and Mayo locations are Minnesota, Florida and Arizona, it took the family a week to make it.
“During that time I got a horrible, horrible rash,” Beckett said.
“I scratched myself bloody. Doctors said there was no one disease that would cause all this. It’s just been a journey to kind of try and figure out everything.”
On that journey, 19-year-old Hannah has learned to give Beckett her glutathione injections, a series of six to seven each day. The treatments helped Beckett regain limited mobility; she can sit for up to two hours each day now and use a wheelchair during that time instead of staying in bed.
It hasn’t fixed every problem, however. Doctors say Beckett will lose her remaining vision within a few months, and her mobility might never be what it once was.
Hannah has given up a lot to be her mother’s sole caretaker. As an all-day, all-night health assistant, she doesn’t have a lot of time for friends or goofing off, but none of that matters to her as much as her mother’s health.
“Through homeschooling and my dad living out of the state, we’ve developed a very deep friendship,” Hannah said. “Just watching her suffer was painful for me. I’m wanting to do everything I can to help her.”
Hannah and her mother said it is important to them to share her story because many doctors still do not believe fluoroquinolones such as ciprofloxacin are dangerous. Those attitudes are changing in light of an increasing number of reports about similar experiences with the drug as those experienced by Beckett.
The Food and Drug Administration in 2013 issued new, mandatory warning labels about the drugs’ risk, including the possibility warnings about permanent nerve damage. There also are several class-action lawsuits in the works against drug manufacturers, alleging they suppressed knowledge of the side effects.
“If we can stop this from happening to another family, we need to,” Beckett said, tears in her eyes. “I don’t want anyone else to go through this.”
Reports like Backett’s have gained attention and brought action by federal regulators.
In July 2008 and August 2013, the FDA added required warnings to the labels of fluoroquinolones, including Cipro, that use could cause tendonitis and nerve damage.
But the problems continued to be reported, and the FDA undertook more study of how fluoroquinolones were being prescribed and their associated risks.
On Nov. 5, officials called a joint meeting of the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee to discuss fluoroquinolones.
“In the last few years, we have received an increasing number of postmarketing reports from patients describing signs and symptoms involving different body sites that often interfere with activities of daily living and can persist,” the meeting report began.
FDA data indicated ciprofloxacin was the most commonly used drug of its kind, with 15 million patients in the United States taking ciprofloxacin in 2014 and 22.2 million taking some kind of fluoroquinolone.
As of November, the FDA’s Adverse Event Reporting System had received 1,112 reports of fluoroquinolone-related disability, or a patient developing problems in two or more of the following systems: musculoskeletal, neuropsychiatric, peripheral nervous system, senses like vision or hearing, skin and cardiovascular.
The report noted this is a low number compared to the millions taking fluoroquinolones, but a very high number of self-reports for any drug.
“The unusually large number of direct reports coming from patients who described similar experiences after taking a FQ was very beneficial in describing these disability cases,” the report said. “Many of the patient’s clinicians were reported to be at a loss as to what was causing these symptoms. Some patients reported extensive medical testing to try to diagnose the cause of their disability symptoms, but test results were frequently negative. Effective treatments were not identified.”
The report included anonymous sample cases, many of whom reported symptoms similar to Beckett’s. One woman said that after 10 days of Cipro, she had to crawl up her stairs because her joint pain was so acute.
The large number of similar cases prompted the FDA to release a safety announcement May 12 warning patients and health-care providers about the dangers of fluoroquinolones and advising them to use alternative treatments for patients with acute sinusitis, acute bronchitis and uncomplicated urinary tract infections, saying the side effects outweigh the benefits.
For some, the warning comes too late.
Beckett still is mostly bedridden, though she can now spend up to two hours a day in her wheelchair.
Her condition is slowly improving in most areas, though it could be years before she gains the ability to walk again or even sit upright without assistance.
The only condition still deteriorating is her eyesight, and Beckett will have surgery this month to try to save the remaining vision in her left eye.
Despite her condition, she is determined to spread the news.
“People need to know about the dangers,” she said. “People need to know about this.”