situational lack of informed consent now in mainstream discussion and news columns. good. this has been published here (Australian national news outlet) and in other columns, for the past 3 days.abc.net.au/news/2024-10-31/...
manufacturers, medics, regulatory bodies, worldwide are on notice.
may God bless whistleblowers.
may God bless health workers with a hunger for truth and ethics.
may prescribers wake up
and select patients instead of indiscriminate prescription.
may translate into prescriptions and production being reduced by 90% as patients unsuitable as candidates are treated with nutrition, physio, lifestyle education, primary treatments.
for example, my mother had hyperparathyroidism at the time of first prescription.
there is not enough expertise in this town to tell me the consequences of all this, or to defend themselves - among about ten other factors my mother is at the effect of in their ignorance and negligence. [she should have been treated for hyperparathyroidism. dr correspondence reveals they were having a guess about what to do and how prolia works. ]
may this journalist and workers behind getting this topic brought to the front be blessed. may we individuals continue to protect loved ones and each other from medical and practitioner harm.
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my Mum continues on, precarious in health, she has a great attitude, her mobility greatly affected, doctors shrugging, fobbing off to other departments,
and i am in the appalling situation where i have to make sure my Mum has a prescription and that she gets a dose on time, because no-one has the knowledge of how to safely stop pr*lia, as she has to live with ill-effects of it.
her endocrinologist retired in recent weeks,
in absolute shame, failure, and disgrace, to my mind,
as he first prescribed without any consideration of if the drug suited her or not.
he prescribed dangerously again, 18 months ago, as he tried prescribing a forteo similar, in complete ignorance and in the worst known way possible.
had refused to see my mother for the past year, cancelling appointments, the abandonment causing great distress to my Mother.
i learnt this recently, that salt is necessary for production of stomach acid, among other important processes. plus, it's delicious. (i use rock salt.)
so then with sufficient stomach acid, we can digest properly and be nourished, which is health for our bones and bodies
the health guideline of decades ago - to reduce salt - has wreaked havoc on or health. reducing salt as a health measure applies to some, should not have been a mass restriction.
i support use of prolia if it helps someone. you just really need a dr or specialist who what they're doing, and has a 5-10 year plan to show you.
who know how things might've been, but i didn't think pr*lia suited my Mum's case. now she is stuck on it.
without it, i think she may have had problems, and may have just overall shrunk, gradually over decades, with associated pain and its management;
now, after >6 years of pr*lia, and its mismanagement, she is at the effect and risk of catastrophic injury.
at 5 years, when i found out she was on it, i asked the specialist if he could see prof Lamy's protocol and get her off it safely,
in short he didn't know how or it was too late. this whole thing is the grief of my life. [poorly prescriptions, mismanagement, ignorance, negligence, mum's deterioration and low mobility from these drugs which have caused more harm than good, and that she is no better-off, possibly worse off.]
also, previous to it all, my Mum had turned it down for about 8 years! drs have insinuated that she should've started then (about 14 years ago). this is complete rubbish and an affront to my Mum. trying to shift (ir)responsibility. i've told her it was a good decision, and good on her!
the article link talks about lack of informed consent. the root of this absence of info is the very lack of knowledge by practitioners, who are undertrained and underinformed by the manufacturer, amgen.
well, here is the update 2024. had not been updated since 2017, although there had been a position statement update in feb 2023 from the Australian osteoporosis organisation HBA, healthy bones Australia, to accompany the 2017 guideline. my Mum's docs didn't read that, till i gave them a copy.
I really feel for you and your mum. It is quite heartbreaking that your mum should suffer through ignorance and the lack of care shown by her doctors.
As you say, Prolia is fine if the doctors / specialists know what they are doing and have a long term plan but it looks like your mum’s hyperparathyroidism should have been sorted out before treatment and it is disgraceful if her doctors are refusing to see her and cancelling appointments. That’s just not good enough.
This is interesting and very scary. I also see that the black box warning also includes pain from the musculoskeletal system. I certainly have suffered from this which has been put down to having Axial spondylitis which coincidently started shortly after taking Alendronic acid. At the time i did ask the Rheumatologist and was told NO. However I read articles that contradict this NO. I feel that there is something a miss with these drugs and it is very very worrying. I am on a so called 3 year Bisphosphonate holiday and my aches have diminished although still there. My dentist said I shouldnt be on them after 5 years but I was allowed to go to 7 years. What the hell is going on?????
glad you are on a bisphos rest, and relief of aches, but that there's differing consensus and i would say lack of up to date knowledge is ridiculous, i find dentists know a lot about osteoporosis / drugs, that's to say that g.p's might not know much beyond prescribing.
in one instance i found a g.p knew as much as or more about teriparatide than the endocrinologist.
endodontist receptionist knew about the need to separate dental surgery from prolia dose.
as i say that though, one of Mum's dentists - dare i say an older guy - had never heard of pr*olia. geez.
a rheumatologist knew enough about teriparatide to say that it was an endocrinologist's area, when i pointed his office. dunno if rheumys can prescribe it but he opted out of Mum's case.
i've chatted with 3 mega-specialists - that's what i call a specialist who's authored papers and contributed to national guideline. one said yes evenity, the other said no to evenity [for my Mum's case], just stay on prolia. the 3rd mega specialist said stay on prolia.
That is what bothers me, when my dentist takes a sharp breath in at bisphosphonates and being on them for over 5 years but the hospital specialist say no its fine.
i know OF people being on them for 15 years and ok. i notice that there has been bad press about bisphosph's, to docs and pharmacists, to the point that prolia is now the main prescription by far. i think this is to do with marketing, lobbying the tga/fda by pr*lia manufacturers. yet my Mum's endo had described prolia as having the same action as bisphosph., he said that to me. so - that tells me they both have pros and cons equally.
in an attempt to mitigate a little, may i say that if you had been on prolia first up, you'd be in the situation where they would be at a complete loss as to how to give you a drug holiday, and you'd be stuck on it, which is my Mum's situation.
best we are doing now is protein and butter in diet, with vit d, k2, other nutrients calcium, magnesium, mineral water, boron, multivitamin, walking around.
I have just read through the UK nogg.org doc you attached and thank you so much. I was never directed to this at the start of my diagnosis. However the changes I have made to my lifestyle fits in with this doc. When I next see my Rheumatologist I will ask if they are aware of it.
i wonder if my Mum (and anyone) could've benefited from 1 year prolia, 3 years bisphosp., 2 year drug holiday from that, then prolia again
it's been said in the guidelines that patient compliance with daily bisphosph tablet might be an issue, thus pr*lia instead ensures patient has the 'treatment'.
that makes me sick that a dr can't trust an old lady to take the tablets. my mum is fastidious and would've taken each tablet each day the right way and right on time
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Maybe the answer is to not start denosumab?
Prolia use
Prolia and Parathyroidectomy
Vertebral fractures in Canada after Prolia discontinuation 
I am from Australia and am new to this site.
