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 captious narcotics that dainty nan bone-thinning illness osteoporosis because of 'dangerous misinformation' astir their broadside effects being dispersed connected Facebook, experts person warned.

Scaremongering posts seen by The Mail connected Sunday falsely declare nan drugs, known arsenic bisphosphonates, are balanced to 'rust remover'. Others opportunity nan tablets really worsen, alternatively than prevent, nan disease.

Yet failing to return nan medicine intends patients look serious, life-changing fractures, imperishable disablement and death, doctors say.

Osteoporosis chiefly affects women – up to 1 successful 3 will person immoderate shape acknowledgment to post-menopausal hormone changes which drastically trim bony density – and stark figures show 1 successful 4 dice successful nan twelvemonth pursuing a hep fracture.

While location is extended grounds that bisphosphonates tin trim nan consequence of a fracture by arsenic overmuch arsenic 70 per cent, our investigation has uncovered troubling grounds that suggests women are coming disconnected them aft being bombarded pinch scare stories successful online support groups.

In 1 backstage group for osteoporosis sufferers connected Facebook, which has much than 3,500 members, women – galore British – promote each different to discontinue medication, claiming it triggers 'internal damage'. They alternatively advocator unproven vitamin supplements aliases hormone replacement therapy (HRT).

In nan Facebook groups, users besides counsel 1 different to cull results from 'faulty' NHS bony density X-rays – known arsenic DEXA scans that thief diagnose osteoporosis – and to activity retired unlicensed tests from backstage doctors instead, which experts opportunity whitethorn not springiness reliable accusation astir bony health.

Clinics offering these tests person sprung up successful nan UK and actively beforehand online their benefits complete DEXA scans.

Leading osteoporosis charities and experts past nighttime condemned nan activity of misinformation arsenic 'truly shocking'.

Craig Jones, of nan Royal Osteoporosis Society, called connected Facebook 'to do much to make judge group members get nan facts'.

'Treatments offered connected nan NHS for nan information person been tested done rigorous, extended investigation tests to make judge they activity safely and efficaciously to fortify bones,' he said.

Kassim Javaid, professor of osteoporosis astatine nan University of Oxford, said: 'There are a cluster of patients who travel into my session and outcry astatine me, saying nan medications we connection are poisonous. It's arsenic if they've been brainwashed. As pinch each misinformation, location is simply a atom of truth to immoderate of nan concerns astir broadside effects, but these person been blown retired of proportion. The narcotics prescribed connected nan NHS are clinically proven successful tests involving complete 10,000 people… this vulnerable messaging is, rather simply, misleading susceptible people.'

One US website, Save Our Bones, which offers proposal connected reversing osteoporosis 'naturally', is regularly referenced connected nan groups.

Professor David Armstrong, from Londonderry, who presents nan Bone Up podcast pinch chap master Dr Richard Abel, said: 'Osteoporosis is up location pinch cancer and vaccines astatine nan apical of nan conspiracy mentation list, and I've nary thought why. There are salient websites successful nan US that harvester a batch of pseudoscience pinch selected due publications to make a superficially convincing case, but it is yet nonsense.'

More than 3 cardinal group are thought to person osteoporosis successful nan UK, starring to 500,000 fractures each twelvemonth and costing nan NHS £4.4 billion. It chiefly affects post-menopausal women arsenic nan diminution successful nan activity hormone oestrogen successful later life tin trim bony density. The first motion is usually a fracture, but location are often delays to picking up nan information – 1 successful 5 women break 3 bones aliases much earlier being diagnosed.

For this reason, The Mail's War On Osteoporosis run – spearheaded by Group Business Editor Ruth Sunderland, who has nan illness – has been calling for Fracture Liaison Services to beryllium established wrong each NHS Trust truthful nan over-50s could beryllium swiftly tested for nan illness if they break a bone.

But misinformation spreading online threatens to undermine this extremity if women are convinced not to return captious medication.

It is already known that 80 per cent of group who are recommended osteoporosis narcotics either ne'er commencement taking them aliases extremity wrong a year. The Royal Osteoporosis Society says this is linked to nan fearfulness of broadside effects, uncertainty astir whether nan narcotics are basal and nan truth that, because nan illness is symptomless, group can't show whether nan narcotics are working. 

A regular personification of 1 Facebook group, referring to alendronic acid, a type of bisphosphonate, wrote: 'It's not bully to beryllium taken astatine each ever! It's a chemic derived from rust remover. It doesn't thief bones astatine all, it can't.'

The truth, according to British experts, is alternatively different. Bisphosphonates, specified arsenic alendronic acerb and risendronate, person extended grounds from robust objective tests that they forestall fractures. They do incorporate a chemic coming successful rust remover and laundry powders, but their formulation is wholly different.

The narcotics tin origin broadside effects specified arsenic constipation, dizziness and headaches, but superior broadside effects are 'very rare'. One of nan astir worrying is osteonecrosis of nan jaw, wherever problems pinch treatment wrong nan rima tin complicate dental treatment.

'It's incredibly rare,' said Dr Claire Vandevelde, a rheumatologist astatine Leeds NHS Teaching Hospitals Trust. 'If you're besides connected precocious doses of steroid medicine aliases you're a smoker, aliases if you person mediocre dental hygiene, that will summation your risk. But for astir group taking bisphosphonates without those consequence factors, it affects 1 successful 10,000.

'Compare that to your fracture risk, which mightiness beryllium 1 successful 5 if you've already had 1 fracture by nan clip you get to an osteoporosis clinic. If you fracture a hep you've sewage a 25 per cent chance aliases much of dying arsenic a consequence wrong a year. So while location are risks to nan drugs, nan benefits acold outweigh those risks.'

Another highly uncommon broadside effect is atypical fractures, which tin hap successful nan thigh bone, sternum and forearm.

But Dr Abel, a musculoskeletal master astatine Imperial College London, said: 'Bisphosphonates activity by suppressing nan process that allows cells to region aged and damaged bony and switch it pinch caller bone. It's imaginable that successful immoderate group it suppresses that process truthful overmuch that nan bones don't repair arsenic good and go brittle, prompting a accent fracture.

'But different things are astir apt going connected arsenic good successful position of someone's diet, really overmuch they workout and their hormone levels. The narcotics won't beryllium nan only factor.'

Facebook groups steering women distant from nan narcotics urge supplements specified arsenic Natto, a Japanese crockery of fermented soybeans rich | successful vitamin K2. Private doctors endorsed by nan group urge calcium, vitamin D, boron, magnesium and zinc.

But nan NHS only advises group to return calcium and vitamin D. Dr Vandevelde said: 'Patients inquire maine astir vitamin K, which worries maine because it tin interact pinch anti-coagulant narcotics and different communal medication. There isn't a batch of grounds for immoderate of these supplements isolated from calcium and vitamin D, which you only request if you're deficient.'

Women seeing backstage doctors declare they were advised to bargain 'vibration pads' – gadgets which tin costs £3,000 that mimic nan effect of workout connected muscles.

But Sarah Leyland, from nan Royal Osteoporosis Society, said: 'We don't person nan grounds that they tin make bones stronger.'

The groups besides support nan usage of HRT – which, experts constituent out, is ironic fixed that it is associated pinch a acold greater consequence of bosom crab than nan broadside effects linked pinch osteoporosis drugs.

HRT is astir effective astatine preserving bony spot successful those going done an early menopause earlier 45, but for those complete 60 'the wide consequence whitethorn outweigh nan benefits', according to nan Royal Osteoporosis Society, because it tin lend to what is already an elevated consequence of bosom attacks, strokes and bosom cancer.

Numerous group posts propose DEXA scans were 'invented to get much women connected bony drugs'. Concerned women are told to usage backstage clinics which connection REMS scans, which are akin to ultrasound but are not licensed for usage connected nan NHS. While experts admit REMS shows promise, location is not capable grounds to beryllium it is arsenic effective arsenic DEXA.

Dr Abel said: 'DEXA isn't perfect, but ultrasound doesn't really activity for bones and can't really show you what someone's fracture consequence is.'

Dr Vandevelde urges women to 'trust their doctors', adding: 'It makes maine disappointment erstwhile I spot group terrified of nan narcotics because they've heard truthful overmuch rubbish online. They consequence not conscionable fracture but disablement and death.'

Last nighttime a Facebook spokesperson said it regularly consults pinch starring wellness organisations to place and region misinformation apt to lend 'imminent harm to nationalist wellness and safety'.