Denosumab problems

Posted , 13 users are following.

Discontinuing denosumab (Prolia) can lead to vertebral fracture, apparently not related to the underlying osteoporosis, but to the development of microcracks in the bones from denosumab. Advice is to replace denosumab, not go cold turkey off the med. Sounds like this drug is ripe for lawsuits, and perhaps should be discontinued. 

https://www.ncbi.nlm.nih.gov/pubmed/27732330

2 likes, 72 replies

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  • Posted

    I was put onto bisphosphonates like Actonel and alendronic acid back in 2004 and after seven years I stopped for two years but in that time I slipped in the garden and fractured my femur  so was put back on them for another three years so in total was on them for ten years but stopped again a few months ago.  I have have recently found out that bisphosphonates can cause small femur fractures called atypical femur fractures. It's supposedly a "rare" condition but not if you read articles on the internet!  I have been told never to take alendronic acid again, I can't even have denosumab as that's the same stuff and the treatment for the tiny (at the moment) femur fracture is a metal nail and screws, something I already have in the other leg.  Doctors have known since at least 2004 about fractures caused by bisphosphonates  but they still dish them out. If I knew then what I know now I would have refused them, especially as my T scores weren't that bad. Anyone on bisphosphonates who has aching, mainly in their thighs but also their hips or pelvis should get themselves checked out as this can be an early sign of an  atypical  fracture and can go on for weeks or months before finally fracturing with very little trauma.

    • Posted

      I am so sorry you've been having these problems.  Someone posted on a thread on another forum - poster asked if anyone had increased bone density without medication.  Several people had, and I was most struck by someone who had turned around her bone density to a point that no meds were recommended any more, simply by a few supplements and walking her dog!  She started with osteoporosis in the spine, I think, and osteopenia in the femur, or was it the other way around, and within a year improved the osteoporosis to osteopenia.  This is also what happened to a friend of mine,  So the point I'm trying to make is that it seems, if the OP is not too far advanced, it's almost too easy to improve bone density.  Why are the doctors still so intent on pushing the OP meds at us?  I do know of others with much worse readings who have refused the meds and tried a little harder with the nutrition and exercise and they too have done well.  

      Do you think that by doing all the "natural" things it will help your bones to heal?

    • Posted

      If only it were that easy. Take the supplements and walk the dog.turn around your T-scores and no need for the prescribed meds. Where as I agree totally with a good diet and exercise regime and even taking supplements, it is not enough and people will still get OP. I don’t think any of us take the meds without deep though about it all.  I fractured my second vertebrae, lifting something far too heavy, on my own, I had always done the heavy lifting myself. Never believed I could have OP because I was strong and fit and muscles, more defined than my husbands.Even at the hospital, they confirmed my diet analysis was sufficent in all the necessary nutrients except VitD. And, the only reason for this was that I had been having radiotherapy for my brain tumour and couldnt fly over the winter months. Living pretty far up in the northern hemisphere allows no exposure to sunlight and up until then, I had spent my winters in the sun. I hope to stop my prescribed meds asap and hopefully stay at the same level, but I don’t know what I can do differently. It is very frustrating. Meantime, I hope you continue to to stay where you are without the worry of having OP
    • Posted

      It is always worth a try Anhaga, at least to begin with, and especially if no bones have been broken. It is sad that so many were given the drugs with only osteopenia and had them for so many years which then led to broken bones from the drugs. 

      Thanks for all your research. It is much appreciated by many of us.

      The choice remains with the patient and no one is forced to take one path or the other. 

      It is good to be flexible too, choose the course for you at a particular time.

    • Posted

      Yes I was struck by how easily this particular person had turned things around so it makes it even more imperative that two things happen: younger people, especially women but men too, be taught about how to care for their skeletons the way we receive advice about avoiding heart and lung conditions and diabetes.  Then we should be monitored after midlife, and promptly given advice about nutrition and exercise before any bone thinning becomes dangerous.  Just think how much money would be saved, not to mention suffering avoided! 

    • Posted

      i will never know what sequence of words the machine found questionable.  Sigh.
    • Posted

      I did not have a scan until I turned 70 and I could not believe that I had osteoporosis.

      As I have said a few times on here I know women who have never had a scan and are blissfully unaware. I envy them.

      Being aware I now do everything I can to help improve my bone health.

      Where it goes from here now for me only time will tell.

    • Posted

      Well, there it is, see, nothing untoward in that post!  Kathleen, you continue to be an inspiration to me with your positive outlook.  Happy Easter! 
    • Posted

      It is certainly always worth a try Kathleen. But the question is, for how long?
    • Posted

      True Anhaga, prevention is always better but unfortunately, sometimes we are “blissfully” unaware. Unlike Kathleen, I am glad I had the scan so now I can, hopefully, turn the diagnosis around.
    • Posted

      Happy Easter Anhaga. You have been a wonderful support to us all on here with your expertise in research as you are a librarian with the skills to do that well. Thank you my friend.
    • Posted

      And a Happy Easter to you, too, Kathleen! 

      We've had snowdrops for a little while now, but today our crocuses put in an appearance.  😊

    • Posted

      Nice! We are at the bottom of Australia and although north has had cyclones and floods we are very dry at the moment so lost a few plants. It is the opposite weather here to yours as we are heading towards our colder months.
    • Posted

      We keep getting howling winds.  I'm sure it's worse than it used to be.  But could be my memory is faulty! 

    • Posted

      You probably are not imagining the winds being more extreme as that is what global warming does. It makes everything more extreme even coldness not just heat.

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