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Reclast: Poor Result...Next steps
I'm female, in my early seventies, very active, no history of fractures or family OP. Have had two reclast infusions over the last two years (very mild side effects w/ first infusion). My Year 1 DEXA shows significant results - spine T score went from 3.0 to 1.4, hips from 2.7/2.5 to 2.5/2.3.
Doc was very enthusiastic with last year's results and said to do one more infusion, which I did a year ago. But I just received my Year 2 results (same facility, although with seemingly less experienced team): Spine - 2.8; Hips 2.5 and 2.4.
Endo's first reaction was that this year's scan was a 'fluke' and had positioning errors, but later said last year's might not be accurate. He gave me the choice of 1 year of Evenity followed by another Reclast, or 2-3 more years of Reclast. Awaiting CTX results - last year's number was 269.
What should I do? Second opinion from a different endo or a radiologist? Repeat DEXA?
I'm hesitant to do Evenity because my mom died of a stroke (although my heart health seems ok).
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Time really flies @loriesco, it’s hard to believe you’ve been on Tymlos that long already. I do wonder if the prior Reclast might have played a role in the limited BMD change. It makes sense that Evenity has come up as a possible next step, since more people are using that approach to give bone building an extra boost. It sounds like you’ve got a thoughtful team carefully considering the options. Wishing you the best with whatever comes next.
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1 Reaction@beanieone Since you went through 5 Reclast infusions, can I ask if you had any adverse side effects? I am now contemplating annual Reclast infusions instead of weekly Fosamax pills but am reading all kinds of scary side effects people have suffered, and continue to suffer with. I initially rejected any medication use but decided, if I could find something that helped and didn't make me regret my decision, I would give it a try. Any feedback would be greatly appreciated!!
@strongbonez,
I started Reclast around 2012 and have had perhaps as many as seven infusions (the information seems to have been lost between docs and insurance companies) without any side effects. There was no such thing as Tymlos, Evenity, Forteo . . .
Prior to each infusion, I make sure to drink plenty of water. During the infusion, I always eat a snack (pretzels work great) and then I drink plenty of water after the appointments. Reclast can be hard on kidneys so I'm guessing that's why the fluid recommendation from docs and nurses alike.
Here's a big one: Always make sure the nurse who administers the infusion knows that it should take no less than 45 minutes; your doc should order it that way. My last treatment was about an hour - when I asked the nurse how long I would be there, she replied "about 15 minutes" . . . after a review of the instructions and a consultation with another nurse, she changed the setting :).
It is my understanding that Reclast doesn't really build bone, but helps us retain our gains.
May you find peace in your decision. Cheers!
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2 Reactions@undetectable My thoughts would be why can’t you do a retest of your DEXA now? Maybe it’s this year’s that is in error. If the doctor thinks one is in error, you shouldn’t have to pay again for someone else’s mistake!! And definitely have an experienced radiologist look at both results!
Good idea - first radiologist said the 2024 test was inaccurate and now A second radiologist is looking at both tests, but my CTX is higher, so everyone is believing 2025 scan. I also had a REMS ultrasound with similar results to the 2025 test - OP in spine but with an added 'bone fragility' score which was normal for my age. PTH also high which rules out the meds my endo wanted me to switch to. I now have the choice of Evenity + Reclast, additional Reclast on its own, or try to improve without meds.