Positive vibes ONLY thread

I just stumbled on this thread looking for some specific info in here. I initially joined the forum not long ago because like most of us I was frightened by my first diagnosis, confused by so many contradictory and complicated tx options that seemed out there, and just gathering all of the info that I could. I hope that this thread gets bumped frequently and becomes one that people think of when they have good news to share. I have none yet because I'm still in the early stages of deciding what course to take. But it's an important and steadying balance.
That's not because reports of bad and sometimes horrible outcomes with the meds aren't important - they represent an important, under-reported and often invalidated reality, especially when you see the same problems reiterated by many people. That info needs visibility, and the people suffering need support and validation. There's also a lot of learning and sorting out to do by us consumers, and forums like this can steer our research/decision making to very important issues that need to be taken into account.
But of course forums like this are also always subject to heavy selection bias - folks who go off to their doc, strustingly say "OK" and have great results with little problem with whatever they've been told to take don't feel a need to find others for support or further information/education or to share their stories. It doesn't dawn on them. I recently ran into a a woman, about my age (74) and mentioned that I'd been diagnosed with severe Osteporosis. (It was literally all that I'd been thinking and reading about for a month. Fear and trembling.) She casually said, "Oh, yeah, me too. I've been on a drug called Replast for years, I never even think abut it any more. No side effects, no more fractures. "Shrug." Oh. And then another friend who said that her Mom had had a LOT of fractures, now mostly wheel chair bound and falls a lot, but started Tymlos about a year ago. No side effects and no more fractures despite ongoing falls. Feeling much better. Oh. I'd actually ducked out of this forum for a while because I just wanted lots of quality independent outcome studies to balance my extreme anxiety over what I'd learned can go wrong with these meds. There aren't enough of them, but as I now see it it really is a bit of a blurry crap shoot, which meds or no meds and all the rest, and finally a matter of choosing your risks, real on either side.
In any case, it's not denial or an invalidation of all of the bad, sometimes horrifying reports in here to really need to hear about things going well, or well enough, for people who've made various decisions. I'm always glad when people do and sometimes just want to read a while bunch of those stories at once. I think it's healthy psychologically and also realistic. This is too long, sorry, but I'm also a retired therapist, and marinating in too much anxiety can be paralyzing, self-perpetuating and unhelpfully miserable. Working on that in myself, but feel like there's breathing room to make the best educated decisions I can and surrender the reasonable but in this case really unrealistic wish to be able completely predict and control outcome. At least that's the goal.

I just stumbled on this thread looking for some specific info in here. I initially joined the forum not long ago because like most of us I was frightened by my first diagnosis, confused by so many contradictory and complicated tx options that seemed out there, and just gathering all of the info that I could. I hope that this thread gets bumped frequently and becomes one that people think of when they have good news to share. I have none yet because I'm still in the early stages of deciding what course to take. But it's an important and steadying balance.
That's not because reports of bad and sometimes horrible outcomes with the meds aren't important - they represent an important, under-reported and often invalidated reality, especially when you see the same problems reiterated by many people. That info needs visibility, and the people suffering need support and validation. There's also a lot of learning and sorting out to do by us consumers, and forums like this can steer our research/decision making to very important issues that need to be taken into account.
But of course forums like this are also always subject to heavy selection bias - folks who go off to their doc, strustingly say "OK" and have great results with little problem with whatever they've been told to take don't feel a need to find others for support or further information/education or to share their stories. It doesn't dawn on them. I recently ran into a a woman, about my age (74) and mentioned that I'd been diagnosed with severe Osteporosis. (It was literally all that I'd been thinking and reading about for a month. Fear and trembling.) She casually said, "Oh, yeah, me too. I've been on a drug called Replast for years, I never even think abut it any more. No side effects, no more fractures. "Shrug." Oh. And then another friend who said that her Mom had had a LOT of fractures, now mostly wheel chair bound and falls a lot, but started Tymlos about a year ago. No side effects and no more fractures despite ongoing falls. Feeling much better. Oh. I'd actually ducked out of this forum for a while because I just wanted lots of quality independent outcome studies to balance my extreme anxiety over what I'd learned can go wrong with these meds. There aren't enough of them, but as I now see it it really is a bit of a blurry crap shoot, which meds or no meds and all the rest, and finally a matter of choosing your risks, real on either side.
In any case, it's not denial or an invalidation of all of the bad, sometimes horrifying reports in here to really need to hear about things going well, or well enough, for people who've made various decisions. I'm always glad when people do and sometimes just want to read a while bunch of those stories at once. I think it's healthy psychologically and also realistic. This is too long, sorry, but I'm also a retired therapist, and marinating in too much anxiety can be paralyzing, self-perpetuating and unhelpfully miserable. Working on that in myself, but feel like there's breathing room to make the best educated decisions I can and surrender the reasonable but in this case really unrealistic wish to be able completely predict and control outcome. At least that's the goal.

@beccac thanks so much for this thoughtful rumination of what many of us feel. I, too, was shocked after reading so many negative information on here. It was especially crazy because my own physician, Endo and my lovely DIL (also and endo) said they see few bad outcomes .

I was fearful AND tearful and went on a website diet. I’m HAPPY to share good news while cognizant that others can suffer ill effects.

Thank you and good luck with your journey!

@nannygoat5

If it helps I have had no noticeable side effects from any of my OP drugs: alendronate, forteo,evenity and Prolia. I have never had a compression fracture. I have heard too many sad stories about people who did not treat their OP with the drugs that are available. Not to say that other using some other methods have not been successful too . I also credit my bhrt for helping my bones.

Yeah #rjd - meagre and inadequate independent long term studies, some meds too new for that anyway, a *severely* broken medical system in the US, especially for those of us on just Medicare, a notoriously medically underserved population (older women), lots and lots of contradictory and largely unstudied opinion online about best courses of action, many individual issues with complicated co-morbidities (arthritis, stenosis, degenerative disc disease, fracture, wedge- depression issues, sacroiliac problems, various abnormal curvatures, etc. etc. and that’s just spine and hip) that demand individualized treatment plans, lotsa luck with that, under-reported ‘minor’ intolerable side effects from meds that undoubtedly account for the high dropout rate ascribed to noncompliance, forgetfulness, lack of meds education and the like in the studies, and on the other hand solid numbers for fracture reduction and reduction of bone loss, plenty of cases that are apparently straightforward and successful, and dismal numbers for QOL and life span after falls that break things, it’s a lousy way to go…. teeter totter. So yeah.
A lot if not most of these ailments are common in old age - we humans do fall apart sooner or later and one way or another. But when there may be some reason to fear the treatment as much as the disease (Is there? I honestly don’t know!) it’s crazy making. I’ve done so much research, and that’s the eco-system. I’ve got maybe about 10 years to live, per family history. How to do that well? Serenity prayer frames it pretty well I think. Doesn’t make decisions for you, and knowing what you’re supposed to control and what you need to accept is an elusive wisdom, but here we are. Between the Reclast lady who just basically sailed thru and is still sailing fine and the people in here saying “I wish I’d never, ever taken this med, my life is destroyed”, a crap shoot. For me it starts with accepting that reality.

Before I retired I worked at a hospice for years alongside my psychotherapy practice. I had it all worked out, and I also knew that I’d refuse treatment for cancer or other terminal illness pretty early on. Quality an easy win on that. It’s all comfortably ensured and on file in my detailed Advanced Directives. Ha. This damn disease is different because it doesn’t kill you - no hospice (until very last minute), no great pain meds, painful slow loss of mobility and increasingly painful deterioration, iffy surgeries, sometimes for years. But not always - a good proportion of untreated people never break a hip or have their spine collapse at all. Yeah, man plans…. I’m leaning toward meds. Sometimes. Sigh. Extra tricky because my spine is ostopenia with a fracture and a mess of other lumbar issues, hips are t4.1. And those meds are more decisively helpful for spine than hips. And of course the very rare out of the blue femur fracture that the new ones can cause - no data on whether bone density is even related to that. And the beat goes on. These are awfully long posts, forgive me forum people - I'm garrulous in my old age.

Before I retired I worked at a hospice for years alongside my psychotherapy practice. I had it all worked out, and I also knew that I’d refuse treatment for cancer or other terminal illness pretty early on. Quality an easy win on that. It’s all comfortably ensured and on file in my detailed Advanced Directives. Ha. This damn disease is different because it doesn’t kill you - no hospice (until very last minute), no great pain meds, painful slow loss of mobility and increasingly painful deterioration, iffy surgeries, sometimes for years. But not always - a good proportion of untreated people never break a hip or have their spine collapse at all. Yeah, man plans…. I’m leaning toward meds. Sometimes. Sigh. Extra tricky because my spine is ostopenia with a fracture and a mess of other lumbar issues, hips are t4.1. And those meds are more decisively helpful for spine than hips. And of course the very rare out of the blue femur fracture that the new ones can cause - no data on whether bone density is even related to that. And the beat goes on. These are awfully long posts, forgive me forum people - I'm garrulous in my old age.