Antibiotics got rid of her chest infection — but Jane says they destroyed her health
AFTER standard antibiotics failed to shift a severe lung infection, Jane Allan was more than happy when her GP suggested she move onto a stronger antibiotic, ciprofloxacin. Jane, who suffers from asthma, was a hospital pharmacist and remembered the excitement when ciprofloxacin became available in the early Nineties.
‘It caused quite a buzz as it was one of a new class of powerful antibiotics that could be given as a pill, so patients could have treatment at home, and it quickly became very popular,’ she recalls.
Yet Jane now blames the drug for the litany of health problems she suffers, including widespread muscle pain and weakness and severe fatigue.
Three years on, the once fit and sporty 50year-old is unable to work. After 25 years in the NHS, she retired early on health grounds.
‘Within four days of taking the first tablet, every joint, muscle and bone in my body felt like they were on fire,’ recalls Jane, who lives in Romford, Essex, with her husband, Tony, 56, a lorry driver, and their sons, Jack, 24, and Harry, 21.
‘I had a burning, stinging and tingling sensation all over my body. I couldn’t sleep because it felt like burning hot water had been poured down my back. I couldn’t sit in the car as I was in so much pain.’
Jane read the patient information leaflet and found serious side-effects, including those she was experiencing.
‘One of the side-effects listed was neuropathy (nerve pain). It said the symptoms could continue months after taking the pills. Other sideeffects included eyesight problems. I was horrified and stopped taking the pills immediately.’
Jane went to A&E and said she thought she was having an adverse drug reaction, but the doctor suggested she see her GP, who prescribed painkillers.
‘The GP said there was no test he could do or treatment he could offer and seemed sceptical that my symptons had been caused by ciprofloxacin,’ recalls Jane.
‘A few days later I developed terrible groin pain and had pins and needles and numbness in my hands, meaning I couldn’t hold a phone, type a text or hold a cup.
‘I began to worry these side-effects might be permanent and felt very let down by the drugs — which I’d always trusted.
‘I used to love swimming and badminton — but now even a walk around the supermarket wipes me out,’ she says.
She lays the blame squarely at the door of ciprofloxacin.
It’s one of a family of antibiotics which are known as fluoroquinolones (others include levofloxacin and moxifloxacin). Jane has since come across others with similar long-term effects believed to be linked to these antibiotics.
Fluoroquinolones are broadspectrum antibiotics, meaning they work against a large number of bacteria, such as salmonella, E.coli, gonorrhoeae and pseudomonas (bacteria that can cause serious lung infections).
The antibiotics were a godsend when they were introduced, as other commonly used antibiotics, such as penicillin, ceased to work for everyday infections such as urinary tract and skin problems.
The fact that fluoroquinolones could be given in tablet form, rather than intravenously as was the case with many other strong antibiotics, added to their popularity.
At their peak, prescriptions for fluoroquinolones from GPs and other community practitioners reached 1.35million a year, although numbers began to fall as the drugs were associated with the hospital superbugs MRSA and clostridium difficile.
But in 2014 there were still more than 750,000 fluoroquinolones dispensed in the community (more are used in hospitals).
And there is a problem with their side-effects.
Although these are much less likely than with penicillins, the most commonly prescribed antibiotics (the side-effect rate for fluoroquinolines has been put at just 0.09 per cent, compared with 3.5 to 5per cent for penicillins), the side-effects of fluoroquinolone are potentially more serious and disabling and may be permanent.
A recent study in the BMJ found fluoroquinolones may contribute to aortic tears and aneurysms (damage and rupture of the aorta, the main artery in the body), which can result in life-threatening bleeding.
More recently, a 2012 study published in the journal JAMA showed people who’d had the drugs had a five-fold increased risk of retinal detachment, which can lead to blindness.
In the U.S., since 2008 the drugs have carried a black box public health warning (a boxed-out warning on the information leaflet) about side-effects, highlighting the risk of tendonitis and tendon rupture. Another black box warning was added to ciprofloxacin in 2013, saying it may worsen symptoms of a rare muscle weakness condition, myasnthia gravis.
It’s thought the side-effects may be the result of the drugs degrading collagen, a protein found in muscles, skin and bones and which acts as a scaffolding structure for strength and stability.
Dr Beatrice Golomb, a professor of medicine at the University of California, recently reported in the journal BMJ Open the experiences of four formerly healthy patients who reported widespread symptoms, including joint and muscle pain, brain fog, mood problems, concentration difficulties, memory problems, anxiety and confusion after a course of fluoroquinolones.
The symptoms persisted even after discontinuing the drugs.
‘Tendon problems appeared to be the most distinctive problem and these can appear up to a year after discontinuing fluoroquinolones,’ says Dr Golomb. ‘But because fluoroquinolones act on cell mitochondria — powerhouses in cells responsible for energy release and respiration — the effects can be felt all over the body, including the musculoskeletal system, the central nervous system and the brain. ‘Organs with high energy demands tend to be the most affected, including the brain. These are very powerful drugs with the potential for serious toxicity,’ she says. Last week the U.S. Food and Drug Administration (FDA) issued new advice on fluoroquinolones, saying the drugs ‘are associated with disabling and potentially permanent serious sideeffects that can occur together. These side-effects can involve the tendons, muscles, joints, nerves and central nervous system.’ The FDA said that for patients with sinusitis, bronchitis or uncomplicated urinary tract infections, the risks of the drugs outweighed the benefits, and they should not be given unless there are no alternative treatments. Here, Public Health England says ciprofloxacin should be used only for treating acute inflammation of the prostate gland or a kidney infection. The UK’s drug watchdog, the Medicines and Healthcare products Regulatory Authority (MHRA), says 5,962 adverse drug reactions have been reported for fluoroquinolones in the UK since 1990, with more than 4,500 for ciprofloxacin, the most frequently prescribed fluoroquinolone (although this may be seriously under-reported). Dr David Healy, professor of psychiatry at the University of Bangor, and director of the patient drug safety group RxISK, says serious fluoroquinolone side-effects have been reported since they were introduced.
‘Their use was justified on the grounds that they were really strong antibiotics that could be reserved to treat serious infections,’ he says. ‘They were then used for everything, including trivial infections and even to prevent infections.
‘The problem is most members of the public regard these antibiotics as safe, and don’t connect their symptoms with them. But they’re not safe — all of them are tricky, and fluoroquinolones have the worst side-effects.’
A spokeswoman for the MHRA said they will work with European regulators to consider any new evidence on fluoroquinolones, but added it was important that patients should not stop the drugs and should speak to their doctors.
BAYER, manufacturers of Ciproxin (the branded version of ciprofloxacin) in the UK said the company ‘would carefully review the information the FDA had posted and continue to work closely with the agency on this topic’.
While she is convinced the antibiotics were to blame for her illhealth, Jane Allan’s battle for diagnosis has been protracted. After six weeks, her GP referred her to a rheumatologist who ruled out rheumatoid arthritis. She then saw a neurologist who tested her for thyroid disorders.
She was also tested for Lyme disease and given an MRI. All tests came back normal.
‘The neurologist was sympathetic and admitted he didn’t know what was causing my symptoms,’ she says. ‘But he did say often patients do have a hunch as to what’s wrong, but there was no test or scan he could do to prove it,’ says Jane.
‘More recently I saw a pain consultant who said it was highly plausible my symptoms may have been caused by an adverse reaction to cipro.’
She’s joined a newly formed online support group, Quinolone Antibiotic Toxicity Support UK, which has more than 35 members.
‘Most of us were young or middleaged and previously healthy, and yet we all feel a course of antibiotics completely wrecked our health,’ says Jane.
She wants more prominent warnings about the side-effect risks from fluoroquinolones and greater awareness among prescribers and pharmacists.
‘We also want them reserved for where they are no alternative treatments,’ she adds.
‘Side-effects may be rare, but with millions of these drugs being prescribed over the years, the number of people who have been “floxed” is growing and there doesn’t appear to be any treatment for us.’