i dunno but i don't see the point in (Mum) getting another scan, due in a few months, scheduled every 2 years. maybe someone can set me straight.
if Mum gets a scan and it shows miraculous improvement, great!, what changes are made to treatment? ;
if scores are not improved, what difference does it make to treatment?
Mum's had so much going on between scans that no one would know what could be attributed to any changes, and if the scores went up or down between any changes; it'd be another ordeal of a day out plus more radiation, with results that'll mean nothing either way;
Mum doesn't have a specialist, he (his receptionist) cancelled her appointments!, there are no options other than continue prolia, seems a waste of time, effort, money,
and it was scans and scores that started all this mismanagement
(edited typos)
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That is an interesting question isn’t it MGBY. When you put it like that I agree with you - what is the point?
When you say radiation I’m assuming you’re talking about a DEXA scan rather than an MRI which I think would show a lot more.. I’ll be interested to see what answers you get from others.
If it is an ordeal getting her to wherever she has it done and you can’t see what is to be gained then is it possible to speak to her doctors and say to them what you have said to us.
On the other hand if she enjoys the outing and meeting people then combine it with afternoon tea or something and have a nice day out. What does your mum have to say about it?
thanks mate, yes, i should've said DEXA scan b.density. you are right, it is up to Mum ... i have mentioned it once, many weeks ago ... it's me or someone who takes her to the appointments, and she misses breakfast on the day because of other issues, outings are just counterproductive to health ..?
great if could make a nice day of it but Mum tires easily and so do i!
Mum had a heap of other things to ask (G.p), so didn't get anywhere near that area of questions! ran out of time, mum is slower, physically and mentally, maybe in shock that endo left her, she is down a few vertebrae, that makes me sick, so, she's been a bit frantic looking for help from any docs, and i reckon they owe her answers but they just haven't got any.
May I ask the age of your Mum? My M was having so many medical appointments in her 80’s/90’s. She seemed to enjoy getting dressed up and going to appointments. But we reached a stage that it was a big effort - she stopped her osteo medic as it didn’t agree with her stomach but she did go to an exercise program and gardened up into her 90’s. After initial diagnosis after a fall she had no further bone density scans. She took her calcium and vit D and yes she did shrink and somedays complained of back pain! Eventually on a walker at 95.
our dear Mums 😊 my Mum's mid 80s, on a walker 6 months ago, previously walking stick a year.
your Mum pretty fit and off drugs,
i wished the same for my Mum, has had health issues when she was younger. never will know but she probably would've shrunk, as my Grans both did, probably not without pain, who never had drugs or supplements and ate biscuits with tea a lot of the time;
Mum had prednisone as part of another medical bungle 20y ago which likely contributed to bone loss. all this stuff i've only found out in < the past yr.
still, there are occasional good reports, miracles, good things in it all; i'll grab them with thanksgiving.
heap of medical appointments, mostly nice staff and people who wanna help; i'm just finding that there are drugs on the loose without prescribers knowing what to do.
I feel for you and your mother. When I read the first three paragraphs of your question, my mind started to formulate a meaningful response. And I can offer you an answer on the basis of just those three paragraphs. But then you begin offering some further context which changes the scenario significantly and raises more questions. Your situation strikes me as unusual.
It is difficult to talk about evaluating treatment when your specialist abandons you and you don’t have time to talk to your general practitioner. You need a professional to guide you. Can you get another appointment in? Find a new specialist?
What were all the changes that you speak of? Did she stop taking or switch medications frequently since the last DEXA? We need the nature and duration of these adjustments to help assess their impact on the treatment regimen.
Why do you say that Prolia is the only option for treatment? I am just trying follow your line of thinking.
Please explain how the scans and their associated scores/results are responsible for whatever mismanagement you suggest has taken place. And then explain the mismanagement. Again, I am not trying to be difficult. I want to put myself in your shoes so I can offer helpful thoughts.
My goal would be to try to get you back on track with meaningful, structured treatment. If we can come up with an approach to get you moving in that direction, the biannual DEXA would still be very useful as it would re-establish a baseline for future treatment.
thanks FrogLeg, i think it's unusual in that i've never seen anything like this before, but maybe not so unusual that lots of people's health is endangered by the drugs and their abject mismanagement (lack of knowledge by docs);
my accounts are sometimes all over the place but that's because i keep finding stuff out, which adds to the picture, but chronologically:
Mum on prolia for years, with doses not strictly on time, often under or over by a 5-9 days. that's bad.
Mum had a 3-week delay due to needing tooth removed - and i put that tooth fracture (and the two before it) down to effect of prolia;
that's when i found out she had been on prolia, and then i barely slept since then, just improving now.
during that time, Mum crushed a vertebra,
at the next dose, the endocrinologist prescribed teriparatide, Mum took it for 3 weeks in the middle of that dose.
so no one has said what good or bad that it did, but Mum sure declined since starting it. don't know if t-score went up or down or up-then-down.
and the dr was prescribing it in a way contrary to guidelines, which caused me trauma,
and there were signs he didn't know what to do, and had nothing to offer,
Mum had hospital stay.
after hospital stay, specialist dropped my Mum as a patient, which unsettled her; i thought it was atrocious, even though i could see he had nothing helpful to offer; but she's hurt, i think coming out of the shock of it all
i've gone on a bit, but there were some months where i hadn't been able to talk about it. there is more!, including 2nd and 3rd opinions, and i can't tell the details except that the option we are advised and going with - with grace of God above all - is... no change to drugs, that is, continuing with pr*lia.
as for my perception about DEXA scan and scores being the start of drugs and their mismanagement, i can't say for sure,
but - my Mum's specialist had been trying to talk her into drug for MANY years before.;
and i don't know what the scores started out as, but i recently looked at the dexa report from a few years ago and i don't think they were that bad.
they weren't great either (-3 and up) but Mum was fine fit and healthy, not buff or anything, not great posture; never broke anything until 6th yr of pr*lia, i had no idea she was on it.
i will say endo probably knows a bit about bone health and scores?, but - only had drugs to offer.
i think there should've at least been a review at 4-5 years into prolia - possibility of bisphosphonate for a rest - but he didn't offer that option to Mum. i don't know why.
that's my version of what's happened, i think it there might be common threads all through it with everyone else's stories.
Forgive my delay. I have been busy caring for my father. There is a lot to digest here. One thing that really interests me is the timing of the Prolia doses. As I understand it, it is typically given every 6 months. My intuition tells me that being off by 5-9 days at each dose wouldn’t be a huge deal. Is there some guidance or document which tells you the safe +/- error range?
Have you heard that tooth fracture is common with Prolia? Did the dentist suggest as much? I have of course heard about ONJ, but that makes more sense to me.
Three weeks strikes me as an extremely short interval for taking teriparatide. One year duration is when one often does a DEXA to judge any impact. The second year often has more growth than the first. When you say that the endocrinologist was prescribing the teriparatide in a way that is contrary to guidelines, what specifically do you mean? And how did your mother’s condition decline in that three week window of taking teriparatide?
the whole thing's a pile of poor management, i don't know how common or uncommon this all is. i think fairly common, otherwise we wouldn't be on a forum looking for answers ..! as i try and look for factors that explain my Mum's case, i recently looked up parathyroid hormone tests which explain a lot. so it's really sad.
varied dose intervals for prolia are still not ideal, and there've been a few for my Mum.
a G.p linked broken teeth to prolia, in a brief answer when i asked. can not talk about it, it makes me sick.
the teriparatide part turns out to be devastating for my Mum, now that i know of hyper PTH history. and she only took it for 3 weeks and stopped due to side effects. thank God she stopped taking it.
so I'm not saying the drug is bad, it was an absolute misprescription for her. can't have tptd if you have hyperparathyroidism. had been on a walking stick the previous year and declined greatly during teriparatide and now on a walker.
as for the other way that the endo was prescribing contrary to guidelines is that the plan was to stop prolia and start teriparatide;
in ACE /AACE (u.s 2020) and Australian (2023) guidelines this sequence in a clear statement is "not recommended".
and there are other ways to misprescribe tptd and he also intended those too.
Whatever your decision will be, the most important step now, in my mind, is to find a doc that you feel is competent enough in this particular field and explains every step they want to take with your Mum. My suggestion would be to turn to AmGen with any questions a doctor might not be able to answer to your satisfaction. My experience with their medical advisor has been very positive, but it could, of course, be different for you. What has been done has been done. The current situation is now your starting point, since you were previously not aware. You are basically starting from scratch and it sounds like you have started to collect information already.
As an aside, I find it interesting that you mentioned fractures of the vertebrae, because that's what AmGen was taken to court for. A Swiss bone specialist raised the alarm on that.
Anyway, I hope your Mum will be taken good care of from here on in, now that you are there to make sure she gets that care. It's difficult to help when you don't have all the info as was the case for you. But now you can be strong for her when you are by her side. All the best.
I take Strontium Ranelate which means a DEXA scan gives a false result so there's no point in me having a scan. My rheumatologist goes on whether I have fractured and/or lost height. I'm happy with that. Been 17 years since diagnosis and initial spinal compression fractures I had have not got worse in all that time.
;I feel the same about endless dr. appts that are stressful and for what? If she can do telephone appt to get her questions answered that might help. My bone dr. recently told me that even though I do the dexa scan every two years, that he thinks it is more important that the studies show that the Osteoporsis medications prevent the hip fractures. My Dexa scan didn't change significantly anyway. Hope that helps.
I don't want to be one of those people that just goes to medical appts and tests in my last few years of life. I feel that some of it is pointless.
update: my Mum's docs never mentioned to her to get a 2-yearly scan, so, she didn't
(good, because that would've been an arduous morning logistically and physically, all for a report that would've said deterioration, or miraculous improvement!, and docs would have nothing to add that would change what Mum does in her routine)
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