John MarshallJohn Marshall used to enjoy running, but in 2017 he suffered a severe reaction to antibiotics and could barely walk.
A 51-year-old man from Kirkcaldy says his health has changed dramatically after just a few days of taking a group of antibiotics called fluoroquinolones.
“Every joint hurt. My fingers, elbows, toes, ankles, every joint hurt,” he said.
“It was a stabbing pain, a jumping pain. My muscles were twitching. It was out of control.”
Campaigners who raise awareness about rare side effects to drugs call this ‘deception’.
Seven years later, John still suffers from chronic pain and regular muscle spasms.
Fluoroquinolone antibiotics can be lifesaving drugs when used against certain bacteria, but serious side effects are thought to be rare.
but, Almost a year ago, new guidance was issued stating that they should only be used in limited circumstances.the more commonly recommended antibiotics were not appropriate.
Britain’s medicines regulator MHRA has warned that fluoroquinolones can have rare but serious and irreversible side effects, including tendon rupture, muscle and joint pain and nerve problems.
The new guidance reinforces previous warnings about complications associated with fluoroquinolone antibiotics, including the risk of suicidal thoughts and behavior.
Despite the new guidance, a leading expert told BBC Scotland News doctors were still over-prescribing.
Professor Neil Miller is one of the few clinicians in the UK who specifically treats disorders related to ‘fluoroquinolone toxicity’.
Fluoroquinolones are a type of antibiotic, including ciprofloxacin, delafloxacin, levofloxacin, moxifloxacin, and ofloxacin, which may also have trade names.
In Scotland, it accounted for 2.4% of the total amount of antibiotics used in 2023, but thousands of people are still taking them.
NHS figures show the number of daily fluoroquinolones administered in Scotland has fallen by nearly a fifth in the past four years, but Professor Miller says his clinics are busier than ever.
He believes prescribing rates remain high because the message about overuse is not getting through to GPs and other doctors.
Since 2015, Professor Miller has treated around 1000 patients from across the UK and hundreds of Scots, including one for the treatment of a serious infection following a vasectomy. This includes John, who was prescribed medication at the hospital.
After being discharged from the hospital, John visited his family doctor complaining of joint pain and other symptoms.
His doctor said that using this type of antibiotic can cause joint pain and that the pain would go away if he stopped taking it.
But John says they still have a dramatic impact on his life.
“Basically every night I wake up and have spasms in my tendons and knees, to the point where my brain physically can’t straighten my legs,” he says.
“I have to use my other leg to stretch my leg, but it hurts just as much.”
Two years after taking the drug, an MRI scan revealed that the tendon in his bicep had torn and required surgery to reattach it.
“I woke up one morning and my shoulder was really sore,” he said.
“I wasn’t doing anything, I wasn’t moving, I wasn’t lifting anything, I wasn’t working, I wasn’t exercising.
“For three months, I had to sit in bed and sleep sitting up. So these drugs caused big, big problems in my life.”
yellow card
John is part of a growing global community of so-called “floxies”, people who say they have been harmed by these drugs.
He worries that many people do not know how to report side effects and the true number of people affected is being hidden.
The Medicines and Healthcare products Regulatory Agency (MHRA) estimates that side effects occur in between 1 and 10 people in every 10,000 people taking fluoroquinolones.
But the watchdog’s “yellow card” system for recording these events relies on voluntary reporting by patients and health professionals.
Professor Miller believes there is a problem with under-reporting of symptoms.
He said drugs can save lives if used for the right reasons, but doctors often use them unnecessarily.
“It definitely helps if you’re sick with certain bacteria,” he says.
“I think the problem with this drug is that it’s kind of widely prescribed for urinary tract infections and for prophylactic purposes because of outdated guidelines.
“These were heavily prescribed throughout the ’80s, ’90s and 2000s, primarily because the guidelines at that stage considered them to be the best antibiotics.”
As well as his clinic in Glasgow, he has other specialist services in Liverpool and London, seeing the most complex cases.
“These are people who have significant walking disabilities or long-term disabilities,” he says.
“This is no small problem.”
Although he regularly meets with patients who have been abandoned by doctors for years, he believes there is still a lack of awareness of this issue.
“They come, but they’re not always in a great place,” he says.
“They’re not being treated well and they’re looking for someone to listen.”
potential risks
Healthcare Improvement Scotland is Scotland’s healthcare watchdog and recognizes that serious side effects “may rarely occur”.
Fluoroquinolone antibiotics are “recommended only in situations where other commonly recommended antibiotics for an infection cannot be used.”
“This may be due to antibiotic resistance, the patient has a severe antibiotic allergy, or initial antibiotic treatment has failed,” the researchers said.
“It is important for each patient to carefully consider the risks and benefits of fluoroquinolones and balance them with the potential risks and benefits of alternative treatments.”
The MHRA says it continuously monitors the safety of all medicines.
Dr Alison Cave, MHRA’s chief safety officer, said: ‘We take all concerns raised by patients and healthcare professionals very seriously and are closely monitoring new evidence.
“We encourage anyone with concerns about suspected side effects related to fluoroquinolone antibiotics to speak to their doctor and report them through the yellow card system.”
In John’s case, treatment at Professor Miller’s clinic will continue. He tries to stay positive, but says he also lives in fear.
“I’m an optimist,” he says. “Sometimes I push myself too much.
“I hate the word that I’m disabled because I feel like I can still get better, because people can get better from this.”
