Positive vibes ONLY thread

@beccac I understand the new drugs like forteo and Tymlos are not as good as building bone in hips as in spine, but the do help. And hip fractures can be repaired and there is a high degree of success, even for folks in late 80s, BUT you must have enough bone for the new hip to be implanted. Just something to think about. One can always try a medication protocol and if causes adverse quality of life issues, just drop the drug.

@kplex It is important to be aware of the good, the bad and the ugly of drugs before you take them. We are all different and that is why some work and some do not. Do your own research be your own advocate.

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
Your post stated so perfectly where I am in my decision making process regarding my osteoporosis diagnosis, and echoes my thoughts that there are a lot of things we don't know about our choices. Three days ago I had an initial appointment with an endocrinologist, and just a few minutes into the conversation when I was asking questions about if it was possible to stop bone loss naturally, or even what could be the cause of my bone loss to try and address that - the doctor asked me if the reason I didn't want to take drugs was because of any side effects. (I hadn't even said yet that I was totally opposed to taking drugs. Just asking initial questions.). He then told me I probably wouldn't be a good candidate for taking drugs because of my hesitation. I then asked "Well, IF you prescribed drugs for me what would it be?" He said either Tymlos or Evenity for a couple of years. Followed by Prolia. I left without signing on to any medication, and no closer to knowing what is best for me. I am thankful to this forum for information on experiences both positive and negative.

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.

@beccac
I found that Great Bones by Keith McCOrmick is the reference book for bone health. It is thorough and well documented and puts the entire picture together for you that would take forever on your own. Get the book or ask your library to get the book.

Like Gravity3, I have had no side effects from either Fosomax or Prolia. The problem has been that either the drug did not increase density (although it might have prevented further loss) or the gains were lost soon after discontinuing the med.

If I could take BHRT, it is this option I would want to explore more thoroughly for bone health. Some of us cancer survivors cannot take hormone therapy and many of those who advocate BHRT need to include this important restriction on its use. But it does seem more promising than most of the osteo meds.

Thank you so very much for this thoughtful and well-written post. You put into words so much of what I’ve been thinking as I’ve been trying to make an informed decision without getting mired in negativity and fear. I need to make a treatment decision soon … have put it off for a myriad of reasons, some valid in my case, others pure fear of unknown outcomes. I very much needed to read this today. Thank you, again. - Leigh