Positive vibes ONLY thread
POV: I’m often left stressed and scared after reading this forum. It occurred to me that most of the people posting here have had bad experiences and wonder if people who have good experiences aren’t on a forum? I was listening to a podcast and the person casually threw out that she had OP and had a year of a certain medication NBD all good. She’s not a spokesperson for drugs and it was good to hear. If 75% of women have osteoporosis/penia surely there are good results out there? My PT, Dr and my endo were all like why are you so upset? You’ll be fine! But after I spend time here I’m faced with gloom and doom and feel awful. Hit me with your good stuff!
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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.
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1 Reaction@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!
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