John Marshall, a 51-year-old from Kirkcaldy, who once enjoyed running, found himself barely able to walk in 2017 following a severe reaction to antibiotics. He states that his health dramatically deteriorated within days of taking a class of antibiotics known as fluoroquinolones. Marshall described his symptoms, stating, “Every joint was sore and I mean every joint: fingers, elbows, toes, ankles – everything.” He further elaborated on the nature of the pain and muscle issues, adding, “It was stabbing pains, jumping pains. My muscles were twitching. They were out of control.” Activists working to raise awareness about uncommon adverse reactions to these medications refer to this condition as being ‘floxed’. Seven years subsequent to the event, John continues to experience chronic pain and frequent muscle spasms. Fluoroquinolone antibiotics are recognized as potentially life-saving treatments for particular bacterial infections, with severe side effects generally regarded as infrequent. Nevertheless, approximately a year ago, updated guidelines were released, stipulating that their use should be restricted to specific situations where alternative, more commonly prescribed antibiotics are inappropriate. The UK’s medicines regulator, the MHRA, issued a warning indicating that fluoroquinolones have been associated with side effects that are rare but can be severe and irreversible, such as tendon rupture, muscle and joint pain, and nerve issues. The MHRA published new guidance that reinforced earlier warnings regarding complications, specifically mentioning the risk of suicidal thoughts and behaviors linked to fluoroquinolone antibiotics. Despite this updated guidance, a prominent expert informed BBC Scotland News that physicians continue to over-prescribe these medications. Prof Neal Millar is among a small number of clinicians in the UK who specialize in treating disabilities stemming from ‘fluoroquinolone toxicity’. Fluoroquinolones constitute a category of antibiotics encompassing ciprofloxacin, delafloxacin, levofloxacin, moxifloxacin, and ofloxacin; these drugs may also be known by brand names. In Scotland, these antibiotics represented 2.4% of all antibiotics administered in 2023, yet thousands of individuals still use them. NHS data indicates a nearly one-fifth reduction in daily fluoroquinolone doses in Scotland over the last four years; however, Prof Millar reports that his clinic is experiencing unprecedented demand. He attributes the persistent high prescribing rates to a failure in communicating the message regarding overuse effectively to General Practitioners and other medical professionals. Since 2015, Prof Millar has provided treatment to approximately one thousand patients throughout the UK, including hundreds of Scottish individuals like John, who received the drugs in a hospital setting for a severe infection post-vasectomy. Upon discharge from the hospital, John consulted his GP concerning symptoms that included joint pain. His physician informed him that joint pain was a possible side effect of this type of antibiotic and would subside once he discontinued the medication. Nevertheless, John asserts that the effects continue to drastically impact his life. He described his nightly experience: “I wake up basically every night with spasms across my tendons and my knees to the point where physically my brain will not allow me to straighten my legs.” He added, “I’ve got to use my other leg to straighten my leg – it’s that level of pain.” An MRI scan conducted two years after he took the medication revealed a ruptured bicep tendon, necessitating surgical reattachment. He recounted the incident, stating, “I just got up one morning with a very painful shoulder.” He emphasized the lack of precipitating activity: “I’d done nothing, I hadn’t moved, I hadn’t lifted anything, I hadn’t been working, I hadn’t been exercising.” He concluded, “For three months I had to sit up in bed and sleep sitting up. So these drugs have caused big, big issues in my life.” John is a member of an expanding global community known as ‘floxies’, individuals who report experiencing harm from these medications. He expresses concern that a lack of awareness regarding side-effect reporting methods may obscure the true number of affected individuals. The MHRA (Medicines and Healthcare products Regulatory Agency) estimates that adverse reactions affect between one and 10 individuals per 10,000 who use fluoroquinolones. However, the regulatory body’s ‘yellow card’ system, designed for recording such events, depends on voluntary submissions from both patients and healthcare professionals. Prof Millar suggests that there are problems related to the underreporting of symptoms. He states that while these drugs can be life-saving when appropriately administered, physicians frequently prescribe them without necessity. Prof Millar commented, “There’s no doubt that if you had a specific bacteria and you’re unwell, it’s going to help you.” He further elaborated, “I think the problem with this drug is it has been prescribed in a sort of wide fashion because of guidelines that are outdated, for urinary tract infections, for prophylaxis (to prevent disease).” He added, “They were prescribed in large quantities throughout the 80s, 90s and 2000s, mostly because guidelines at that stage thought that they were the best antibiotic.” In addition to his clinic in Glasgow, specialist services are available in Liverpool and London, which handle the most complex cases. He described these cases, saying, “Those are the ones who have significant walking problems, long-term disability.” He emphasized, “This is not an insignificant problem.” Furthermore, he frequently encounters patients who have been disregarded by medical professionals over time, and he maintains that awareness of this issue remains insufficient. He observed, “They come in and they’re not always in a great place.” He continued, “They haven’t been treated well and they’re looking for someone to listen to them.” Healthcare Improvement Scotland, the regulatory body for healthcare in Scotland, acknowledges that serious side effects “may rarely occur”. It states that fluoroquinolone antibiotics are “only recommended in situations when other antibiotics that are more commonly recommended for infections are not able to be used”. It further clarifies, “This might be where there is antibiotic resistance, or a patient has a severe antibiotic allergy or treatment with an initial antibiotic has failed.” It concludes, “It is essential that for each patient the risks and benefits of fluoroquinolones should be carefully considered and balanced against the potential risks and benefits of alternative therapies.” The MHRA asserts that it consistently monitors the safety profiles of all medications. Dr Alison Cave, the MHRA’s chief safety officer, stated: “We take all concerns raised by patients and healthcare professionals very seriously and we closely monitor new evidence.” She added, “We advise that anyone who has concerns about suspected side effects relating to fluoroquinolone antibiotics to talk to their doctor and report it via our Yellow Card scheme.” John’s treatment at Prof Millar’s clinic is ongoing. He mentions his effort to maintain a positive outlook despite living with fear. He remarked, “I’m an optimist.” He also noted, “I do push myself sometimes, maybe too far.” He expressed his aversion to the term ‘disabled’, stating, “I hate the term that I’m disabled because I still feel I’m going to get better, because people can get better from this.” Copyright 2024 BBC. All rights reserved.

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