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Disappointing update on Tymlos
Osteoporosis & Bone Health | Last Active: Mar 25 7:51am | Replies (52)Comment receiving replies
@anewyorker There are a number of studies on that page. One study looked at Tymlos vs. placebo in post-menopausal women for reducing fractures. Vertebral fracture incidence for women on Tymlos was 0.06% (4 fractures) and for placebo it was 4.2% (29 fractures). So the absolute risk reduction is only 3.6% (4.2% - 0.06%). The drug companies (and supplement companies) love to tout “relative risk reduction” because the numbers are more impressive but ARR is really what one needs to look at with research studies.
This blog explains this in more detail if you are interested: https://blogs.imperial.ac.uk/medical-centre/2023/09/15/decoding-risk-in-clinical-public-health-practice-absolute-vs-relative-risk-reduction/
I have taken Tymlos, Forteo and now Evenity and I expected each of them to make only very small difference in my fracture risk. I was willing to give them a try because I was alarmed that I had a vertebral fracture. So far, so good. No new fractures.
My BMD in my spine has never been that low. An increase would be nice but clearly in my case, BMD improvement hasn’t really impacted my outcome to date.
Part of my skepticism with remaining on meds long term is that the absolute risk reduction isn’t that big.
At any rate, if you have not fractured and continue not to fracture, that is good thing!
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@oopsiedaisy
My memory is that you have just discovered and shared in a Mayo post reply that you have hypercalciuria.?
Untreated hypercalciuria (excessive calcium loss in the urine) can significantly undermine the effectiveness of osteoporosis medications. Research indicates that if hypercalciuria is not addressed, patients may fail to see expected gains in bone mineral density (BMD) even when taking potent drugs.
But on the bright side, treatment of hypercalciuria will make a huge difference. Treating hypercalciuria (excess calcium in the urine) directly improves the success of osteoporosis therapy by plugging the "calcium leak" that often causes bone-building drugs to underperform.
Plus, your previous results on the drugs which you have taken have all been thru the narrow lens of your hypercalciuria which means that it is unique to you and will not be reflective of anyone else's results from those same osteoporosis drugs who is not suffering from hypecalciuria or an underlying disease that impacts osteoporosis.
I do think that your situation is very insighful and helps us all see how an undiagnosed disease may effect our treatment and the results which we may have on treatments when an underlying disease is present. This is why an endocrinologist, who will run all the tests to rule out any underlying disease, is so important to any of us who have received a potential osteoporosis diagnosis. Thank you for sharing this insight with us!
I think that a post by you with your insights of checking for underlying diseases and then information about how your treatment affects your osteoporosis would be very helpful. Thank you for the information and your insights.
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@oopsiedaisy unfortunately, I did fracture my L1 vertebra in October 2023, but the cause is a bit ambiguous. Obviously osteoporosis didn’t help, but I fell after I tripped over my canister vacuum, tried to recover, ricocheted around the room, slammed into a closet door, and wound up falling hard on my lumbar spine. I don’t consider it out of the question that I would have fractured even if my spine were stronger. That is the only fracture I’ve had so far (crossing fingers)! And it has healed and is stable.
It was after this happened that my endo said it was time for an anabolic agent to try to strengthen my bones. Unfortunately, I turned out not to be a great advertisement for tymlos.