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"Osteoporosis: The emperor has no clothes"

Posted , 8 users are following.

allison72169
allison72169

The above-captioned is an excellent article, by Jarvinen et al., published a few months ago in the Journal of Internal Medicine. You can find it with Google (or some other search engine), since links don't seem to be allowed on this website. Though the article is highly academic and therefore not the easiest reading, these authors importantly take on the assumptions that drive the diagnosis of, and current pharmaceutical treatment for, osteoporosis. Personally, I consider them a more authoritative source than any of the popular medical websites, even those that are reputable, since all of the sites, to one degree or another, tend to parrot the mainstream view.

An unspoken assumption that permeates this site, and people's reasoning re: whether or not to take osteoporosis meds in general, is that, because osteoporosis is a frightening, potentially injurious condition, one must do something to combat it. (The article addresses this as well.) Regrettably, many serious-to-life-threatening conditions or diseases lack any viable treatment -- think, e.g., certain cancers, Alzheimer's, congestive heart failure. That vacuum of fear is fertile grounds for pharmaceutical solutions that may be more harmful than the condition itself, as well as wishful shot-in-the-dark measures such as various supplements and dietary modifications. I'm not suggesting that we need do nothing, even though there's no way of telling what may/may not actually help. Still, it seems important to acknowledge that none of these measures are as yet clinically substantiated, as the letdown could be great in the event that one goes all out yet sees no improvement in bone density or even sustains a fracture despite best efforts. I think the Jarvinen article does a lot to help put fracture risk in perspective.

 

2 likes, 22 replies

22 Replies

  • kathleen65757
    kathleen65757 allison72169

    Posted

    I only found the abstract so I will try to find the whole article. it challenges the notion that we have that if we have osteoporosis we could fall and break bones. But it could be more to do with general frailty. It challenges our thinking of what we know about osteoporosis.

    When I find the whole article and it is not one am I will process my thoughts and comment further.

  • Emis_Moderator
    Emis_Moderator allison72169

    Posted

    "since links don't seem to be allowed on this website"

    Please do not say or spread this as it is simply not true. There is a Help/FAQ section linked at the bottom of every page in the forums about this and every aspect of the forums. Links like below are no problem and from NCBI will always be approved. It is only commercial or dubious links that are removed.

    http://www.ncbi.nlm.nih.gov/pubmed/25809279

    • allison72169
      allison72169 Emis_Moderator

      Posted

      I'm glad to learn that I was mistaken about links. The link that you give above to the Jarvinen article is excellent.
  • diana22660
    diana22660 allison72169

    Posted

    Thanks so much for posting this, I've only skimmed the article so far, but will have a serious read later. Seems to presents quite a different and refreshing approach... 
  • dot60135
    dot60135 allison72169

    Posted

    Many thanks for posting about this article, I had already decided not to take AA and this has re-enforced by belief. I hope it will also convince my (GP) daughter ;-)

    Best wishes, Dot.

    • kathleen65757
      kathleen65757 dot60135

      Posted

      Dot, do you know your t score?

      Are you doing other things to help your bone density?

      I am 70, in Australia, and am taking magnesium, vitamin D, mega calcium and doing some walking.

       

    • dot60135
      dot60135 kathleen65757

      Posted

      Hi Kathleen,

      I had a serious accident falling onto granite boulders and DXA scan was done as a routine following banding of pelvic fractures and total hip replacement. Previously very fit and active, always slim and engaged in extreme sports.

      My T-score shows Hips -2.7 Spine -2.8 so OP diagnosis. I am taking suppliments but was concerned about AA side effects and half life of 10.9 years.

      How wonderful to be in Australia, sadly I had to cancel my trip to the Australian Grand prix as long haul flight just after surgery was not permitted, maybe next year :-)

      Best wishes, Dot.

    • kathleen65757
      kathleen65757 dot60135

      Posted

      So sorry Dot! About your accident and your allergies!

      Your t scores are not too bad so you may be able to improve your bone density naturally, hopefully!

      Are you over 60?

      I hope you can manage to come to Aus one day.

       

  • Juno-Irl-Dub
    Juno-Irl-Dub allison72169

    Posted

    Hi Allisno, I am not an expert in OP. I have read the Jarvinen article. I have also read a comprehensive and angry rebuttal of it by an Australian osteoporosis  (OP) specialist who questioned Jarvinen's methods and analysis (and, so far, I can't bloody locate it now but will keep hunting . .). You stated In your post Allison "personally I consider these authors a more authoritative source than any of the popular medical websites . .".  Why on earth would you say that? Are you saying that you would completely accept what Jarvinen et al. says and then dismiss professional expertise, findings and advice from - the National Osteoporosis Foundation( NOF), the Harvard Health Clinic, the Cleveland Clinic, the Mayo Clinic etc. Why would you do this? ( There MAY well be some truth in saying that OP is over-diagnosed and over-treated (Jarvinen) and that some patients may just not benefit from bisphosphonates (BS). BUT other OP specialists would disagree and would argue the opposite - that OP is seriously  underdiagnosed, should be screened for, and treated in some way before it does major harm. . . )

    You seem to want to place OP in among other serious life-threatening conditions that lack any "viable treatment" eg. cancer, Alzheimers, congestive heart failure (CHF). Actually the pharmaceutical industry has come up with some really effective treatments for cancers (most types), Alzheimers (to slow it down) and CHF ( This has now almost become a 'chronic illmess' due to modern medications). No "vacum of fear" here, just good results for the patient. And yes, these meds. cause side-effects also . . .

    I know your real concern is the reported  side-effects of OP meds. and their reported frequency of occurance.  And this poses a real dilemma for you as these are all there is at present. I think your thinking here is called 'castrophizing' - a psychological term for, when presented with an event, one envisages the absolutely worst senario. We can all do this at times. Take one known side- effect of BS meds. - ONJ: The NOF, reports the incidence of ONJ as very rare - one person in 10,000 to 100,000 patients. I know you reckon that this condition is under-reported and you may be right. So let's say this side-effect is actually 10 times greater - that's still 10 patients in 10,000 to 100,000 !!  Your major fracture risk could be 10% or 20% or 30% in the nest 5 or 10 years . . . So, leave aside the daft GPs who automatically 'throws' even 'borderline' OP patients on BS, for a minute - we can deal with those. BUT the rest of us MAY be living dangerously if we refuse treatment. Especially if doing so is based on fear that may not ever be justified. Fracturing is pretty awful, so is ONJ but which may be more likely?  I know that your well- argued skepticism about doctors and prescribing is well- founded based on you past expeniences but try not to let it permeate the future also. 

    Finally re. fracture risk - Jarvinen could be correct. If so, the FRAX risk measurement tool, used world-wide is ineffective. Maybe it is . . . . 

    Kind Regards, (your nemesis!! )   j

     

    • dot60135
      dot60135 Juno-Irl-Dub

      Posted

      Can I just add, as one that has a life threatening allergy to porcine that most OP medication has a small constituient of porcine, not important to most but it would certainly kill me!
    • Juno-Irl-Dub
      Juno-Irl-Dub dot60135

      Posted

      Hi dot, You're very thorough!  How did you find out the detailed constituents of OP meds. ?  I've never heard of such an allergy. It must be tough to have to be always checking . . . Take care, J
    • dot60135
      dot60135 Juno-Irl-Dub

      Posted

      Hi Juno,

      I have had the allergy since a small child, it is rare but I have met a couple of people with the same and things could be worse, imagine if it was lobster and champagne 😉

      In my professional life it was imperative that I knew about drug half life, interactions and constituents so not a problem for me but still taken by surprise when other medics have no idea and hand out something potentially life threatening. Having lived with it for 62yrs I would like to enjoy a long retirement 😂.

      Best wishes and take care, Dot.

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Hi nemesisconfused I am back after a two-plus-week absence due to a death in the family (elderly mother; died of CHF, which, contrary to what you state, was very definitely an acute vs. chronic disease, at least in her case).

      You asked "why on earth" I'd consider Jarvinen et al. a more authoritative source than some of the popular websites; I already gave my reason, that being that "all of the sites ... tend to parrot the mainstream view." This is not to say that I "completely accept what Jarvinen et al. says and then dismiss professional expertise, findings and advice from [a list of healthcare sites that you gave]" but rather that I found their assertions about harm:benefit ratio and very high numbers of patients needed to treat in order to prevent even one fracture to be well argued. The widely read sites, such as Mayo and Cleveland Clinic, tend to simply state that medications are "needed" in vast numbers of people without making much if any mention of potential catastrophic side effects or offering any critical analysis about these drugs' dubious benefits. Nor do they mention that the meds seem to work by increasing bone mass but not by strengthening it -- thus the paradoxical side effect of atypical femoral fracture, in which the meds lead to the very outcome they are intended to prevent.

      I didn't contend that cancer lacks "viable treatment." I would, on the other hand, maintain that there is, as yet, absolutely no drug that has any demonstrable effect on Alzeheimer's progression. But then, cancer, Alzheimer's, etc., aren't our focus on this site.

      My real concern is less the reported frequency of side effects of OP meds, though I believe these are vastly underreported, but rather the stunningly long half-life of the drugs -- ten years or more -- that magnifies the risk of side effects well beyond that for other classes of (non-OP) drugs. I would disagree that my thinking is "catastrophizing"; rather, it is CRITICAL thinking: the questioning of the dominant strain of thought of the medical establishment in terms of risk:benefit, high numbers of patients needed to treat in order to see any actual benefit, and other factors. BTW, even if one doesn't suffer "the absolutely worst senario," there are countless internet forums where patients who took bisphosphonates were disabled by joint pain, severe digestive distress, and other comparatively minor (since eventually they subsided) effects from the drugs. These patients had to discontinue the bisphosphonates altogether. The rate of adherence to bisphosphonate recommendations is reported to be quite low due to the considerable amount of misery they cause. I don't see how such drugs can be called "very effective" as what can't be tolerated obviously isn't effective.

      You cite "the rest of us [who] MAY be living dangerously if we refuse treatment." Well, I am among this population, as I've refused treatment; I'm not distinct from it. And I have experienced the pain of having had a fracture (wrist, due to fall on black ice) so have no illusions that a fracture of the hip, e.g., would be less disabling. I am actually deeply frustrated that the pharmaceutical industry has so far failed to come up with any treatments that are not unacceptably dangerous or more effective; I'm not in the least sanguine about it.

      That said, everyone on this forum must of course decide for his- or herself whether the risks and benefits posed by OP drugs are acceptable and significant, respectively. I would never advise anyone to forego a treatment based simply on whether I, personallly, considered it safe/effective. We are on this forum in the first place, if I'm not mistaken, to share our views, not to have to hold back out of fear that someone might somehow miss out on a medication that they would otherwise take that might (or might not) help them.

       

    • chris00938
      chris00938 allison72169

      Posted

      Allison, you are right - everyone's view is food for thought!   When that GP put me on Alendronic Acid before even having my bone density scores and I found I couldn't take it because it made me SO giddy that I almost fell several times, that side effect alone makes it more dangerous to take it than not take it, and is little mentioned.
    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Allison, first of all, I'm really sorry to hear of the death of your Mum and, whether she was youngish or lived to 110, it is still an awful experience and I really hope you are doing ok. 

      You know you argue so many points so well and I agree with a number of them. But it always comes back to the dilemma of making a decision. It's funny that towards the end of your post you referred to my concern about people who by refusing treatment may be "living dangerously" - and that you are one of those. So am I. I'm really not as 'clinical' as I may come across. I am quite simply teffified of many vertebral fractures (my hip is ok) where normal life becomes impossible and full of pain. So I take the meds. and hope I'll escape most of the side-effects. So, in a way, we're both acting out fear: you - of side-effects, me - of spine fractures. And I think it's fair to say that both of us have our critical faculties intact!  

      Kind thoughts,  J

      PS. Sometime later I'll explain what I meant about CHF. Not an appropriate time at present.

       

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Thank you, Juno, for your kind words; much appreciated.

      You are a worthy debate opponent indeed. Regarding vertebral fractures, my OP score is also for the spine, not yet the hip. Leaving aside points of contention re: the drugs themselves, I've read contradictory information about the significance of vertebral fractures and wonder if you can shed any light on this. On the one hand, I've often read that compression fractures -- those occurring in the vertebrae -- are not necessarily painful but that they can cause a stooped appearance if the spine loses height. On the other hand, I've sometimes read that they can be quite painful and therefore disabling. Is it sometimes one way, sometimes the other, I wonder? Are vertebral fractures more often painful than not? Though of course no one would want to appear stooped, I wonder, if that alone was the effect of vertebral fractures, whether the risks from the drugs would be worth it. ... Uh-oh, looks like I've already returned to the topic of the drugs themselves.

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Hi Allison, As far as I can  remember there are two types of vertebral fractures - compression and crush. I have heard that some fractures are extremely painful until there is some healing. And I've also read that people have been found to have had (?compresson) fractures and didn't even know. Only found by Dexa or X-ray - or notable height loss.  So maybe not contradictory . . . My worry is that if you don't do something to try and "strengthen" or "rebuild"  the bones that more will occur. . . (Back to the drugs!)

      While I'm very fond of my knees, I don't fancy being forced to look  at them for the next 20 years !!!   I must read up on this a bit more . . . 

      J     ( and definitely not your 'nemesis' !)

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Hi Juno, I used "nemesis" only because you'd jokingly done so yourself, in your prior post.

      A

       

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      And I just wanted to make sure you DID know I was joking in the first place! 

      Take care.  J

    • kathleen65757
      kathleen65757 allison72169

      Posted

      I am very sorry to hear of the loss of your mother, Allison.

      I still miss mine many years after her death.

      I agree with all you have said and especially weighing up the benefits against the risks which are too great in my opinion.

      I also enjoy your debating with Juno as it allows a devil's advocate style of arguing.

      Some people make the right choice by taking the drugs because they escape the side effects and benefit from taking the medication whilst others escape a nasty side effect by choosing to wait as they would be amongst the unlucky ones.

      Making an informed choice is what makes us free!

       

    • allison72169
      allison72169 kathleen65757

      Posted

      Kathleen, thank you for your kind words about my loss.

      As for the drugs: still reading everything I can find on them. And still unconvinced that the potential benefits outweigh the risks.

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