New study on biphosphonates

clinicaloncology.com/Curren...

I am concerned by this, it's not fully conclusive yet and perhaps there will be genetic or dietary factors involved but microcracks in bone tell me there is something fundamentally wrong with slowing down bone degradation via osteoclasts.

As someone who has recently been diagnosed and recently fractured it's making me think this decision over very carefully.

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  • Sorry, I don't understand the decision you refer to? I'm currently in discussion with my consultant about whether to go back on to biphosphonates.

  • I'm also recently diagnosed, with a spinal fracture, and was concerned to see this paper - I don't feel happy at all about starting on a biphosphonate but can't seem to find an alternative drug which offers a better side effect profile for me with my other long term conditions. I'm going to ask my consultant about this paper.

  • Diagnosed one year ago, with 4 spinal fractures. short trial on Alendronate , then Riseondrate. Neither suited me. Then tried Aclast infusion once a year. No problems, only spelling them!! Other long term conditions = RA, Osteoarthritis, Sjogrens, Vasculitis, High blood pressure, cancer, Bronchiectasis with pseudomonas

  • Please see my reply concerning FORTEO(or Forsteo).

  • It's not a surprising result. What is surprising is that this information is not more widely known. The bisphosphonates work by preventing the osteoclasts from removing old bone. This theoretically is to allow the bone-building cells, osteoblasts, to build bone faster than old bone is removed and thus increase bone density. Unfortunately after a while these new bone cells are being laid on top of an increasingly older matrix, which becomes brittle, because the osteoclasts have not been able to do their job. It would be a better strategy for the bones to be gently and appropriately stressed (weight bearing exercise anyone?) so that the osteoblasts are encouraged to build new bone, rather than poisoning the osteoclasts.

  • My consultant indicated that I'd be much less likely to suffer fractures in the future if I went onto a bisphosphonate and I finally thought 'let's just do this' but that I'd combine the drug with exercise etc. However, I woke up the next morning to hear about Imperial's research on Radio 4 and went right back to having serious doubts about it. The jury is still out. In the meantime I've joined a gym and am aiming to focus on the right kinds of exercise until I can see him again. I'm also going to have a look at the research paper.

  • There's a specific therapy called osteogenic loading that essentially let's you compress your own bones (slightly). This stimulates their growth. If you google osteogenic loading, wolfs law and bone you'll come across a company that has a patent and a series of gym machines that allow you to do this. I believe it's also entirely possible, if you're careful to do this yourself.

    The concept is that your nervous system gets feedback from the bones before they break and if your own strength is providing that compression then you will back out of the compression in the same way you back out of placing your hand on a hot stove element.

    It seems like You need to put 2-3 times your own body weight on bones before they get stronger(wolfs law) there's no chance that walking achieves this, running can achieve 5x this at the point of the heel striking the ground but this is dangerous because you can't control it, can't back out of it and your joints and bones are moving during the entire process.

    I sit in my hallway, back on a yoga mat on one wall, feet on the other wall , my legs have a 140 degree bend, I have a digital scale (that's the expensive bit) in between the feet and the wall, I press for 5 seconds as hard as I feel comfortable with. Generally this generates about 300-400kg. Note that whilst I'm compressing bone my joints are not moving, I'm providing the force, not gravity, there are no sudden impacts and if I feel any pain I can back out of it.

    YouTube has many videos on osteogenic loading and there are a couple of studies showing people can achieve quite serious gains. 5-10%

    It's fairly new but costs quite a bit $40/session and it's patented so you can just copy their machine (unless you don't intend to sell it) It's worth looking into. But it's also worth doing your homework, if you get it wrong you could hurt yourself.

    In my mind if I can compress my own bones safely without jarring and damaging joints and take a few supplements then that's better than taking a drug that might not have been thought through properly.

    The body was designed to get stronger bones through loading, all the running around, jumping and arm wrestling we did as kids. To me this mechanism should be the preferred one.

  • Interesting. I suppose that's why we are recommended to wear a weighted walking vest and gradually increase the weight we carry. My aim is to carry something similar to the weight I lost over the past few years, but so far I'm only about halfway there. In case anyone reading this hasn't already read other posts by me in which I said I'd improved my bone density naturally, here we go again: in one year I improved my t-score from -2 to -1.6, despite still being on steroid therapy for PMR. Diet, supplements, and, especially, exercise. Drugs had been recommended for me, but no longer!

  • You can read our story on this news, and some comment from our expert clinical advisers, on our website nos.org.uk/news/2017/march/...

  • Thanks for the link Sarah.

    "Dr Abel said it was imperative that more funding be found for larger studies to confirm his team's findings."

    That's what will increase consumer confidence.

    If microcracks are weakening bone, which is very likely then it's likely to add to the many concerns ppl already have about biphosphonates such as accelerated bone turnover and ONJ.

    Doctors (I've been exposed to) currently aren't telling patients about these issues which is a pity.

  • I'm in the US and under the supervision of a teaching medical school professor who is my rheumatologist, I am now on Forteo by Eli Lily. (Forsteo may be the similar medication in the UK).

    Something that others may wish to research and consider.

  • diagnosed with OS after hip fracture a year ago, fully recovered have been discharged by surgeon, mainly due I feel, to exercising for two hours daily, however, prescribed AA end of January 2017, stopped taking after five weeks of intensive pain, ie extremely painful stiff neck, followed by intense muscle spasms for seven days, each week the pain became worse. I also heard Imperials Research on Radio 4 which I found disconcerting and considering OS affects so many people was surprised that it hasn't been reported on any of the main TV channel news bulletins, perhaps there needs to be a wider forum for OS sufferers or should I say we need a 'louder' voice

  • Hi seaholme,

    That was why I was not interested in taking AA because of the side effect of joint pain. I have enough joint pain anyway as I have OA (osteoarthritis) and was not prepared to take the chance of getting that side effect. I chose to take Strontium and after discussions with a medic and a check on my BP with a 24 hours monitor was granted an on-going script for this. Unfortunately, we are the guinea pigs.

  • thanks for response, had appointment with GP this morning but this was cancelled as GP unwell, now seeing Pharmacist tomorrow, but think that I'll be referred to my Rheumatologist but I am considering going the natural route although my OP level is -3.9 and it's in my spine, apart from that I have good health - I'll look up Strontium, (have always had normal BP)

  • You can get good advice from an experienced physiotherapist on strategies for protecting the spine and strengthening core muscles and muscles that support the spine. That would be my first step, along with optimizing nutrition and making sure I got enough appropriate exercise. :)

  • many thanks for response, very helpful, I exercise 2 hours each day to strengthen muscles for my hip, and I'm now including exercises for OP, also eat healthily ie I don't eat prepared food, biscuits, chocolate etc, consulting a physio also seems to be appropriate for me as I enjoy exercising and I'm very reluctant to try the other medications as they all seem fraught with danger

  • Strontium replaces calcium in the bones. It's heavier, hence increased bone density, but is the bone stronger?

  • have just read up Strontium, and agree does it make bones stronger, you begin to think that we're on a hiding to nowhere with these medications, I'm really going to think about the 'way forward' very seriously

  • Have a look at this article:

    hindawi.com/journals/jeph/2...

    There's also good info about vitamin K2 on the internet.

  • Hmm is a worry. I got told my a Dr a couple years ago that there was evidence to suggest that after a certain amount of time (this was unclear) that bones did not benefit from prolonging bisphosphonates and that after whatever that time is, bones actually become less strong (it was a bit vague as is my telling of this). But after that I went to my GP to review and she had a sharp intake of breath when I told her and she looked at how long (12 years) I had been taking it. This was really only for a vertebral fracture, not overall OP. She also told me the AA stays in the bones for a very long time (I took that to mean years).

  • 12 years on bkiphosphonates and you don't have osteoporosis. Wow.

  • The reason I was put on on AA was because of back (spine) pain I'd been suffering quite a while. Spine was x-rayed and was reported as partially collapsed T6 and looked 'osteoporotic' along with T5. I was having cancer treatment at the time. My DEXA scan a few years on of hip and low spine were in what is these days regarded as the osteopenia range. AA was to prevent more fractures (collapses). I became concerned about being on AA for so long but kept being advised to stay with it. It was only when a new young GPs came to the surgery she took me off it.

  • Yes, AA stays in the bones indefinitely. It's been shown it stays for ten years, hasn't been looked at for longer, so far, but the implication is that it is there forever.

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