i miss you guys, needed a rest from the boards plus looking after my Mum, and i have exhaustion illness. i'm aghast at the lack of medical knowledge on these drugs by docs and specialists, and inaccessibility of them for appointments. my Mum's endo cancelled her appointments.
he had total ignorance about forteo. mum's feeling abandoned, i think he had nothing to offer but harm, she is lost and a bit frantic about it, he's the one who got her into it all and had dropped her, he is worst of the worst. second opinion was even more ignorant.
i guess there have been a few good things by the grace of God, and at the same time, i have much despair and want to die sometimes.
my family's strained.
so much i wanted to say i can't remember anything. just that if anyone starts a drug, make sure your doc knows what they're doing. this is hell on earth. i understand that h*ll is a bad swear word in the u.s, and that swearing not allowed on the forum, but in australia it isn't such a big deal word, and really i would say swear words are the absolute least of anyone's worries here.
so yeh it's he// on earth,
recently found out my Mum had had a couple of delays between doses over the years, delays of less than a week but still they explain the trouble she has now. this is the dereliction of the medical practice, as my Mum is a stickler for dates and would've been particular about the dates.
a specialist and a g.p have blamed her for not starting treatment earlier. i heard that line of accusation for the third time and said
if mum had started ten years earlier, she would've had these problems six years later, so please help mum and none of this is her fault.
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my sleep was shot for many months, i turned down various prescription medications, after taking small doses here and there. i could start up on herbs again as sleep a little patchy.
everyone here seems to just keep going, so i will follow the example ...
yes, a new boxed warning for pr*lia, for kidneys.also, as i understand it, from the manufacturer, dosing strictly 6 months, there used to be an allowable 4 week delay, now down to zero. I'm not sure when this happened. mum's endo mentioned 4 week allowable delay about 10 months ago, but we know he is an ignoramus.
now, 6 months can be either 182 days or 183 days,
well, one of those 6-mth blocs is a day early or a day late. this is sloppy.
they make it up as they go along, with no care for peoples' lives,
people and their relatives suffer.
'they' is the manufacturer, and 'the manufacturer' is a pile of reps, accountants, marketers, solicitors, co directors, phDs, some medics ... and among them - i hope - whistleblowers-to-be
We were very sad to hear about the difficult time you and your mum have been having and do hope you gain support from this forum.
Our specialist nurses thought it would be useful to clarify the information you shared about a warning in the US about denosumab as an osteoporosis medicine. The warning was very specifically about the risk of very low blood calcium if this drug was given to people with advanced chronic kidney disease especially those on kidney dialysis. We hope this is helpful.
so much debacle negligence malpractice grievous harm continually going on that i've seen with osteoporosis drugs and their mismanagement, that defies belief, so, the stress is coming out sideways.
my Mum's g.p has reported ill effects, but since i've discovered discrepant dosing from years ago, the dr said they were too old to report.
ask your dr to report.
mum's endocrinologist unbelievably bad, prescribed a forteo to follow after stopping prolia, how does that happen (ignorance) and how can they be informed. where's the box warning for that? the gp's didn't know either, they unquestioningly went along with it. the timing of it ended up with both drugs overlapping, then stopped (forteo) due to side effects and she remains on pr*lia - because no choice. this in itself makes me sick, and the debacle continues.
some people really need a drug treatment, i can see that from the forum and also someone i know has weak bones -
i don't think my mum was in that category,
or if that was the right treatment let alone drug,
i am trying to work with what is but the drs are saying no
gday Raleigh, mum's endo wanted her to stop prol and start teriparatide, last yr.in short, there's 3 different ways to prescribe it dangerously and looks my endo had a go at all 3.
i hoped it would help, but so much lack of professional expertise on it has been a step backwards for my Mum when she really needed the opposite.
apart from that, i hope it's going well for you.
for my Mum i would say it was misprescribed,
it's a mess. she took it for 3 weeks and would've been better off skipping that. whatever shape she is in now, it's better than if she had gone ahead with endo's intention to stop prol and start tptd ...
... my Mum some weeks of tptd stacked on in the middle of a prol dose, and i think that she is at the effect of it 6mth later. within a fortnight she had difficulty walking and went from walking stick to wheely walker. she stopped because of the side effects, endo said it 'should be alright to stop it', but i don't think that helped either.
that's incorrect way #3 of prescribing tptd.
she's now bending out of shape before my eyes.
this is a drug so new here that even pharmacists had never heard of it.
total clustermuck.
there should be investigation in to why docs didn't know how to prescribe it, but in this town i think they will just not prescribe it again
Just a couple of things... First. I'm so sorry. Second. thank you for sharing the info you have despite all you're dealing with.
Then, what? Prolia--kidney issues, and it looks like I'm working on some kidney problems. (Hypercalureia.) Bisphophonates are apparently known to aggravate PVCs, and my left ventricle is already hyper-irritable. (Maybe it won't kill me...but they affect my quality of life, definitely don't need more of them.) Evenity has a black box warning that scared one of my doctors away. I hear Tymlos can cause cancer. What's left but Forteo? Anyone got anything on that one?
you're kind, thanks, my Mum would've been in much better shape had the drugs been correctly prescribed. if checks were in place that docs would know how to prescribe.
tymlos is forteo-ish.
my Mum's docs didn't know how to start or stop it properly,
that's the main negligence, that's likely caused a lot of decline,
plus it caused her confusion, which it's listed in ill-effects on one of the crimps, not sure if it was listed on another of the crimps - they differed!
sounds like your doc reads info, that's something
the forteo dispenser pen my Mum had was adjustable,
i would've been interested in a 3/4 dose for my Mum, just so it's less harsh, but drs had no clue. i later asked another endo about it who said it was an option.
in a scan 3 months after starting/ stopping tptd, it showed my Mum had small tumors, outside the bone, but it then meant tptd was no longer an option for the future, as any cancer is a contraindication for use of tptd
i'm not sure if directly caused by tptd - or prolia, for that matter,
i would say they were in the area and likely suspects, and at the very least didn't help
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