Alert over Facebook conspiracy theorists scaring women into quitting lifesaving osteoporosis drugs – as experts warn patients are risking death if they stop taking treatment

Women are quitting vital drugs that treat the bone-thinning disease osteoporosis because of ‘dangerous misinformation’ about their side effects being spread on Facebook, experts have warned.

Scaremongering posts seen by The Mail on Sunday falsely claim the drugs, known as bisphosphonates, are equivalent to ‘rust remover’. Others say the tablets actually worsen, rather than prevent, the disease.

Yet failing to take the medication means patients face serious, life-changing fractures, permanent disability and death, doctors say.

Osteoporosis mainly affects women – up to one in three will have some form thanks to post-menopausal hormone changes which drastically reduce bone density – and stark figures show one in four die in the year following a hip fracture.

While there is extensive evidence that bisphosphonates can reduce the risk of a fracture by as much as 70 per cent, our investigation has uncovered troubling evidence that suggests women are coming off them after being bombarded with scare stories in online support groups.

In one private group for osteoporosis sufferers on Facebook, which has more than 3,500 members, women – many British – encourage each other to quit medication, claiming it triggers ‘internal damage’. They instead advocate unproven vitamin supplements or hormone replacement therapy (HRT).

In the Facebook groups, users also advise one another to reject results from ‘faulty’ NHS bone density X-rays – known as DEXA scans that help diagnose osteoporosis – and to seek out unlicensed tests from private doctors instead, which experts say may not give reliable information about bone health.

Clinics offering these tests have sprung up in the UK and actively promote online their benefits over DEXA scans.

Leading osteoporosis charities and experts last night condemned the wave of misinformation as ‘truly shocking’.

Craig Jones, of the Royal Osteoporosis Society, called on Facebook ‘to do more to make sure group members get the facts’.

‘Treatments offered on the NHS for the condition have been tested through rigorous, extensive research trials to make sure they work safely and effectively to strengthen bones,’ he said.

Kassim Javaid, professor of osteoporosis at the University of Oxford, said: ‘There are a cluster of patients who come into my clinic and shout at me, saying the medications we offer are poisonous. It’s as if they’ve been brainwashed. As with all misinformation, there is a grain of truth to some of the concerns about side effects, but these have been blown out of proportion. The drugs prescribed on the NHS are clinically proven in trials involving over 10,000 people… this dangerous messaging is, quite simply, misleading vulnerable people.’

One US website, Save Our Bones, which offers advice on reversing osteoporosis ‘naturally’, is regularly referenced on the groups.

Professor David Armstrong, from Londonderry, who presents the Bone Up podcast with fellow specialist Dr Richard Abel, said: ‘Osteoporosis is up there with cancer and vaccines at the top of the conspiracy theory list, and I’ve no idea why. There are prominent websites in the US that combine a lot of pseudoscience with selected proper publications to make a superficially convincing case, but it is ultimately nonsense.’

More than three million people are thought to have osteoporosis in the UK, leading to 500,000 fractures every year and costing the NHS £4.4 billion. It mainly affects post-menopausal women as the decline in the sex hormone oestrogen in later life can reduce bone density. The first sign is usually a fracture, but there are often delays to picking up the condition – one in five women break three bones or more before being diagnosed.

For this reason, The Mail’s War On Osteoporosis campaign – spearheaded by Group Business Editor Ruth Sunderland, who has the disease – has been calling for Fracture Liaison Services to be established within every NHS Trust so the over-50s could be swiftly tested for the disease if they break a bone.

But misinformation spreading online threatens to undermine this goal if women are convinced not to take vital medication.

It is already known that 80 per cent of people who are recommended osteoporosis drugs either never start taking them or stop within a year. The Royal Osteoporosis Society says this is linked to the fear of side effects, uncertainty about whether the drugs are necessary and the fact that, because the disease is symptomless, people can’t tell whether the drugs are working. 

A regular user of one Facebook group, referring to alendronic acid, a type of bisphosphonate, wrote: ‘It’s not good to be taken at all ever! It’s a chemical derived from rust remover. It doesn’t help bones at all, it can’t.’

The truth, according to British experts, is rather different. Bisphosphonates, such as alendronic acid and risendronate, have extensive evidence from robust clinical trials that they prevent fractures. They do contain a chemical present in rust remover and laundry powders, but their formulation is completely different.

The drugs can cause side effects such as constipation, dizziness and headaches, but serious side effects are ‘very rare’. One of the most worrying is osteonecrosis of the jaw, where problems with healing inside the mouth can complicate dental treatment.

‘It’s incredibly rare,’ said Dr Claire Vandevelde, a rheumatologist at Leeds NHS Teaching Hospitals Trust. ‘If you’re also on high doses of steroid medication or you’re a smoker, or if you have poor dental hygiene, that will increase your risk. But for most people taking bisphosphonates without those risk factors, it affects one in 10,000.

‘Compare that to your fracture risk, which might be one in five if you’ve already had one fracture by the time you get to an osteoporosis clinic. If you fracture a hip you’ve got a 25 per cent chance or more of dying as a result within a year. So while there are risks to the drugs, the benefits far outweigh those risks.’

Another extremely rare side effect is atypical fractures, which can happen in the thigh bone, sternum and forearm.

But Dr Abel, a musculoskeletal expert at Imperial College London, said: ‘Bisphosphonates work by suppressing the process that allows cells to remove old and damaged bone and replace it with new bone. It’s possible that in some people it suppresses that process so much that the bones don’t repair as well and become brittle, prompting a stress fracture.

‘But other things are probably going on as well in terms of someone’s diet, how much they exercise and their hormone levels. The drugs won’t be the only factor.’

Facebook groups steering women away from the drugs recommend supplements such as Natto, a Japanese dish of fermented soybeans rich in vitamin K2. Private doctors endorsed by the group recommend calcium, vitamin D, boron, magnesium and zinc.

But the NHS only advises people to take calcium and vitamin D. Dr Vandevelde said: ‘Patients ask me about vitamin K, which worries me because it can interact with anti-coagulant drugs and other common medication. There isn’t a lot of evidence for any of these supplements except calcium and vitamin D, which you only need if you’re deficient.’

Women seeing private doctors claim they were advised to buy ‘vibration pads’ – gadgets which can cost £3,000 that mimic the effect of exercise on muscles.

But Sarah Leyland, from the Royal Osteoporosis Society, said: ‘We don’t have the evidence that they can make bones stronger.’

The groups also support the use of HRT – which, experts point out, is ironic given that it is associated with a far greater risk of breast cancer than the side effects linked with osteoporosis drugs.

HRT is most effective at preserving bone strength in those going through an early menopause before 45, but for those over 60 ‘the overall risk may outweigh the benefits’, according to the Royal Osteoporosis Society, because it can contribute to what is already an elevated risk of heart attacks, strokes and breast cancer.

Numerous group posts suggest DEXA scans were ‘invented to get more women on bone drugs’. Concerned women are told to use private clinics which offer REMS scans, which are similar to ultrasound but are not licensed for use on the NHS. While experts acknowledge REMS shows promise, there is not enough evidence to prove it is as effective as DEXA.

Dr Abel said: ‘DEXA isn’t perfect, but ultrasound doesn’t really work for bones and can’t really tell you what someone’s fracture risk is.’

Dr Vandevelde urges women to ‘trust their doctors’, adding: ‘It makes me frustrated when I see people terrified of the drugs because they’ve heard so much rubbish online. They risk not just fracture but disability and death.’

Last night a Facebook spokesman said it regularly consults with leading health organisations to identify and remove misinformation likely to contribute ‘imminent harm to public health and safety’.