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The way it was explained to me by my endo, Prolia Rebound is when you stop taking Prolia and the gain you made with Prolia falls away. Prolia is like gum, when it falls away, it takes not only what it added but my bone also. So, within 18 months- 2 yrs of being off Prolia, I went from osteopenia to -4.2 and -4.7. I am 62 and not on medicare but on blue cross blue shield -gold plan. I did do one treatment of reclast. It made me super sick, but little improvement and some worsening. Every doc I've seen since reclast has said that was wrong protocol. Reclast stops bone loss but I don't really have bone to lose, I need to rebuild faster (Evenity) than I'm losing. Radiologist says I'm at 100% fracture rate. Insurance denied and Amgen plans are not a fit, I'm outside the income limits. I've talked to Amgen multiple times and each thing they have tried has been unavailable to me.
Replies to "The way it was explained to me by my endo, Prolia Rebound is when you stop..."
Prolia works by preventing the cells that break down bone from forming, from developing and from living as long. Your body developes a great resevoir of cells waiting to transition and waiting to finish transitioning. When you stop Prolia, when anyone stops prolia these cells resurge to far beyond baseline, unless you take a medication to stop them.
Jduke, I think you need combination therapy https://www.frontiersin.org/articles/10.3389/fphar.2020.607017/full
It seems like you don't have any bone left, but you do. An antiresorptive is crucial to avoid fractures. You also need to rebuild bone. I'd want Tymlos. Obviously you can't use reclast. I'd choose risidronate with Tymlos. I'd choose that combination over Evenity.
Some medical offices are good at reversing insurance decisions. Some know how, some don't. Some are willing to make the effort, some aren't.
You might press your endocrinologist's office to fight for you, or change offices In the meanwhile you might see if you can get approved for Tymlos and start risidronate or alendronate.
I'm sorry you are in this situation and wish you the best luck.
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Hi jduke, I would still make the point that the disaster of multiple fractures that sometimes occurs after stopping Prolia does not require a year or more to happen. People sometimes report it happening within 2-4 months of missing a Prolia shot. This may be what you are describing with it taking away your "own" bone not just the bone that Prolia helped you build. I'm just adding that whatever happens it has not been clearly described in any research I've seen that the sudden fractures are fully accounted for by the amount of general bone loss in DXA scores.
I'm sorry you lost so much bone in 2 years. I totally agree with you wanting to try Evenity. Doctors and insurance tried to push me to take something else other than Evenity but I wanted to take the med that would give me the most bone growth possible. All the meds have serious possible side effects - why take a med that doesn't build as much bone if you can take one that builds more? WindyShores has reminded me there are other considerations such as Tymlos allowing control of the dosage but in general Evenity is the one that makes the most sense to me. I lucked out and got Evenity thru the Safety Net program (that is if you call 6 months of struggling with doctors to get Evenity luck). Anyway I was about to pay out of pocket to take Evenity when I got Safety Net approval. I don't know your financial situation and no one wants to pay that much but it might be worth it if it gives you better odds of building some bone and not fracturing. Also if your hips have poor density doctors like Ben Leder mention that Evenity is a safer choice than Forteo and Tymlos.