Any non fracture members?

Posted by rudysmom @rudysmom, May 18 7:24am

I guess I’m just looking for some encouraging words. I was diagnosed in February and still working through the different stages of grief/loss. I seem to have more days stuck in depression/sadness.

So, was just wondering if anyone on here has dealt with OP for quite a while and hasn’t fractured? I know you can fracture even if your scores are osteopenia range. I feel like everyday I’m just waiting for a fracture to happen. Im exercising 6 days a week and watching my food intake. I’m just hoping as time goes on this feeling lessens. Sometimes I’m not sure if it’s the diagnosis that’s making me sad or just the fact that I’m getting older, I’m 60, and reality has finally set in.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for kfhoz @kfhoz

@lylii I sure hope that it is not true that your "... post will probably make a lot of people angry ..." as people are here to learn and compare what we have learned and concluded for ourselves. My situation is a little like yours in some ways, and I am going with HRT, LIFTMOR type exercise, and some supplements for now. Avoiding OP medications, at least for some time, appears to be a frequently chosen path by people on this site.

Here is the link to the discussion that @daisy17 is referring to.
https://connect.mayoclinic.org/discussion/study-two-thirds-of-all-fractures-are-not-attributable-to-osteoporosi/
Original paper here:
https://academic.oup.com/jcem/article/104/8/3514/5427152

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@kfhoz

Great paper -- many thanks. Old age, by itself, no matter what you do, is likely the most common culprit in bone breakage.

My take: Low bone density by itself won't necessarily predict bone breakage or worst case scenarios. Besides a DEXA, a bone quality (TBS) and FRAX (USA) score (you can calculate it yourself online) are useful in deciding if and which medicine to take.

Other than that, a good diet, adequate sleep, exercise, stretching, avoiding risky behavior that could result in falls, selecting a doctor that you have confidence in, and (for me) taking a drug that has no day-to-day side effects, is a reasonable approach.

My recommendation: Do your research to become informed, selecting high quality information sources and then take your own "reasonable approach."

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I had not heard going on meds for osteopenia. I do have osteoporosis and I am going to take my chances and not go on any other meds either. I liked the suggestion of taking the collagen trio with fortibone and have started it. Has anyone heard about NMN Volera? I am taking some other meds that would interact with it and will need to wait a few months to try it. Thank you for sharing about not going on meds. I have really learned a lot with everyone sharing.

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Profile picture for lylii @lylii

@joyboudreau
I hear you. I was 60 when I fell on the edge of a wooden ramp and cracked three ribs (I'm 66 now). For Heaven's sake, I think anyone at any age would have broken something with that fall. Of course, I was immediately sent for DEXA scan and of course it showed osteopenia. I was immediately told I had to start on medication. The nurse practitioner in charge of the Fracture Prevention Clinic gave me a brochure so I could choose which medication I wanted. My husband was already on Forteo, but he has rheumatoid arthritis, and definitely had weak bones. I had my choice of Forteo (don't remember why I didn't choose that one), Tymlos (caused cancer in rats, though at notably higher doses than ever given to humans), bisphosphonates (had watched a friend of my Mom's go through jaw necrosis on that one - no thanks), Prolia (once you start you can't ever stop or you will lose any and all progress made) and probably more meds I'm not remembering. I weighed my options and chose the Tymlos, knowing that I had a strong family history of kidney stones, and that was a potential side effect. I told the NP about it, but she just kind of blew it off. Sure enough, over a year in I started getting very bad abdominal pain. It wasn't in the area where kidney stones typically cause pain, so it took 9 months for me to be diagnosed (I stopped the Tymlos on my own). I even saw a urologist who announced that my pain was not typical kidney stone pain, but he would send me for pelvic floor therapy, because he hadn't known anyone who didn't benefit from pelvic floor therapy! That night I ended up in the ER with terrible pain. The proper scans were done, and I had a very large kidney stone stuck in my right kidney. No way was it coming out on it's own. Had to have a procedure to have it removed - miserable experience. I decided right then that there was no way I should have gone on any of those meds, and unless I had obvious severe signs of osteoporosis (not just a bit of osteopenia), I would not go on any of the drugs again. I don't really think I ever needed to go on the medication to start with, and I am angry that I wasn't smart enough to just say no. Obviously there are a lot of people with severe osteoporosis who must have these medications, but I do not believe that everyone who has osteopenia, or has a fracture caused by something that would likely give anyone a fracture, automatically needs to be put on these drugs. It took me awhile to get past the anger I felt from my experience (maybe I'm still not over it). Live your life, don't let numbers on a dexa scan report scare you to the point that you are afraid to live. PS, a week ago, I stepped backward and tripped on our small dog and took a hard fall right on my rear end, trying to avoid crushing the pup. Yep, I broke my tail bone. Of course I was immediately sent for a dexa scan - results were basically the same as one from two years ago - osteopenia. Am I going to go back on meds? Heck no. I know my post will probably make a lot of people angry, and I'm sorry - I'm just telling my story and my opinion.

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@lylii, I don't think a single soul on the site would feel anger at your post. We respect your choice and are happy that you are giving us the details that help us with our own difficult decisions.
I never considered not taking osteoporosis medications. But I'm having a difficult time with the atherosclerosis drugs.
What will you do about the tailbone. I've heard they are painful and have to heal on their own.
You saved the pup!

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Profile picture for samclembeau @samclembeau

I was diagnosed in the '90s . no medications until this year (HRT) haven't broken anything and I am pretty active. I was a flight attendant up until 2008. you get bumped around a bit. I will be doing a dexa later this month to see if HRT makes it better.
I have to admit, I never really worried about it until last year. Actually, not really worried about it. More worried about the medications.

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@samclembeau

If it helps at all I have taken alendronate, forteo, Evenity and currently Prolia. I haven't had any noticeable side effects from any.

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Profile picture for gently @gently

@lylii, I don't think a single soul on the site would feel anger at your post. We respect your choice and are happy that you are giving us the details that help us with our own difficult decisions.
I never considered not taking osteoporosis medications. But I'm having a difficult time with the atherosclerosis drugs.
What will you do about the tailbone. I've heard they are painful and have to heal on their own.
You saved the pup!

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@gently
Thank you so much for you kind words! I hope everyone makes the choice that is best for them - I know it is such a hard choice to make! The tailbone is still quite painful - it will take quite awhile to heal, I've heard. But my pup is fine, and that is all that matters....
Thank you - I wish the best for you!

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Profile picture for mangos @mangos

@wilkenl How long can you stay on Recast, and where do you go from there, that seems to me the million dollar question in all of this

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@mangos - Sorry for the delayed response. I've just returned from a long trip.

My Endocrinologist tells me that I can only be on Reclast for three years. After that, there is no further treatment that I can take, as I've already completed a year of Evenity. It's best if you address your question to your own doctor, as they have a complete profile that will help them guide you as to what is best in your particular case. For instance, in my case, I have had three of my four parathyroids removed, so I am unable to use any of the medications that might challenge my last parathyroid, e.g., Forteo, which Google AI will tell you is a synthetic version of parathyroid hormone (PTH).

Meanwhile, do make certain that you are eating well, including among other foods, lots of nuts, seeds (which contain important micronutrients) and Vitamin C to help your bones to stay strong. Prunes, too, which do good work for your bones.

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I'm a 85 year old white woman with no fractures. I'm considering taking volera after reading some
reviews from various users on Mayo clinic site.

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Profile picture for emgb3441 @emgb3441

I'm a 85 year old white woman with no fractures. I'm considering taking volera after reading some
reviews from various users on Mayo clinic site.

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@emgb3441

I took a look at their website. I don't see any research links. There are many products out there now that claim that their product will improve bone density. Many are dubious. I believe that we need to take a breath when we see things like this and do our research so that we can dispassionately evaluate. "Purchaser reviews are not a substitute for rigorous science based research. There is no miracle product.

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Profile picture for gravity3 @gravity3

@emgb3441

I took a look at their website. I don't see any research links. There are many products out there now that claim that their product will improve bone density. Many are dubious. I believe that we need to take a breath when we see things like this and do our research so that we can dispassionately evaluate. "Purchaser reviews are not a substitute for rigorous science based research. There is no miracle product.

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@gravity3
I too have learned the hard way to do my research first. I would be leary about taking it based on what I read.

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