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 researchmaven @researchmaven

@sadtonight123

Hello! I have been on the brand name Atelvia 35 mg, weekly, for 10+ years with a one-year drug holiday after 5 years. It doesn't roll back my osteoporosis. It does make me "stable" according to my specialist, who has retired.

Note that with it, and especially the generic version, you need to drink a lot of water with it -- 1-2 full glasses,. or it can be harsh on your gut I warm the water to make it go down easier.

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@researchmaven Thanks so much for that information…I certainly appreciate your sharing that with me. I will do some research on it, as all the other drugs they’re pushing sound terrible. I know not everyone gets the side effects, but those that do are really suffering. Take care

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Profile picture for jozer @jozer

@gently so true. Why we wait so long when we know bone loss starts at 30ish and ramps up at menopause is beyond my comprehension. As I've posted before we have screening colonoscopies, mammograms starting at 40, regular cholesterol screenings, 6-month dental checkups but we ignore osteoporosis when we KNOW medically bone loss begins around 30 AND a Dexa is a cheap and easy way to identify bone loss. Wow. Since roughly 75% of women over 65 have some form of poor bone health wouldn't you think??

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@jozer, it's crazy.

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Profile picture for samclembeau @samclembeau

@jozer interesting. my doctors usually ask me where I want to go, just like what pharmacy you want to have prescriptions sent to. Can't you just ask him for referral to another center?

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@samclembeau appointment on Thursday…will certainly ask but he feels a yearly dexa is unnecessary as he said my CTX number shows my med is working. Would sure like to see my t scores after a year of reclast.

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Profile picture for yds @yds

In response to the question of rudysmom, I am 73, and was diagnosed with osteoporosis when I was 51 years old. Thankfully, I have not fractured. I started on alendronate from 2004-2010, went drug holiday from 2010-2019, then back to alendronate from 2019 to early 2025. None of my doctors were tracking, and I did not know any better about limits on the use of alendronate until last year. My doctor put me on Tymlos in June 2025 with the most horrible side effects which I have previously written about. Stopped Tymlos in October 2025, then doctor put me back on half-a-dose of alendronate in November 2025. I decided to stop six weeks later and have no plans for returning to any osteoporosis medications (or that doctor). I have "used up" the allowed time for antiresorptives (alendronate); I will never try Tymlos again or Forteo for that matter; I can't take Evenity or any medication that increases my risk for vascular disease because of a strong family history on having this disease; and my oncologist would not allow me to go on HRT because I had breast cancer in 2000. Because there are currently no viable options for me in the long-term, I have chosen not to go on Prolia. I am managing my osteoporosis through improved nutrition, supplements, and Onero. In May 2026, my CTX score was 241 and my P1NP was 35.4---both very positive outcomes. Although my most recent DEXA scan shows severe osteoporosis for my hips (-4 T score) and osteopenia for my spine, a REMS scan last January showed a low five-year risk of fracture on my hips and femoral neck (3-5%) despite the -4 T-score on DEXA, and a slightly higher risk for my spine (5-9%). Although I have been doing DEXA scans since 2004, I don't trust it completely, especially given my very small frame. This is why I did REMS, which is far more reliable (it is not covered by insurance). In fact, the T-score results and fracture risk information provided by REMS are not aligned with the results of my DEXA scan's T-scores. If you are concerned about fracture, you might consider getting a REMS scan. The REMS scan results (along with the results of relevant blood tests) will provide you with information which you and your doctor could consider as you think about a way forward.

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@yds I have had 2 REMs scans since starting on Tymlos in Sept. 2025. The first REMs scan gave a -3.3 lumbar reading in February after almost 5 months of Tymlos. Then in August I had another REMs scan with a -3.5 lumbar reading, despite a rise in P1NP from 97 to 157. Even my trabecular bone health worsened slightly between REMs scans. DEXA is useless for me as my entire spine has suffered injuries and deterioration. I had bilateral hip replacements in 2017, but years prior to that surgery I already had osteopenia and took no meds or vitamins to correct. So what to believe? Is Tymlos working based on good blood markers or do I believe the REMs technology?

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