High anxiety regarding Reclast or Prolia decison for OP meds

Are you on Prolia now? If not what medication did you transition to?

@sandrac The scariest issue with Prolia is when stopping it. I have not followed this thread so maybe you are well aware of that but for anyone that might not be, it's when stopping Prolia that it gets really scary. You lose bone rapidly and some people have multiple fragility spinal fractures. And by multiple I have seen 8 or 10 fractures claimed after stopping Prolia without a strong bio-phosphonate to counter what happens when stopping. Apparently the longer you are on Prolia the greater the risk of the multiple fractures.

@255anny My osteoporosis doctor has suggested I follow Evenity with Prolia and then go back and forth between Evenity and Prolia. I asked about his experience with that and he said he has patients who have gone Evenity - Prolia - Evenity but no further so far as Evenity hasn't been around long enough to have gone further. He mentioned 2 years on Prolia.
I know of no studies following this kind of strategy and I wonder about following Prolia with Evenity. I'm don't know if there are any studies showing that is safe. Would Evenity protect from the fracture danger when stopping Prolia? He does not seem to worry about that but I haven't posed the question to him. Many docs seem unaware or unconcerned about those multiple fractures. I don't get that at all.

I followed it with a year of Reclast to keep the gains. You are correct—you shouldn’t just stop Prolia without the progression through the other drug to back it up. I took a drug holiday and am now on Evenity and will shift back either to Prolia or Reclast afterwards, which is protocol. (The reason for Evenity is that I had two fractures from a bad fall even though my numbers were pretty good—but the doctor thinks it is worth reinforcing my bones to help prevent others. I have tolerated it well.)

No, I transitioned to Reclast. After a year drug holiday, I am now on Evenity to strengthen my bones after a hard fall that led to two fractures (not necessarily fragility as my numbers had improved). After Evenity I will either go back to one Prolia or Reclast, depending on my numbers.

My concern exactly - that Evenity doesn't fully or at all, protect from the risk of stopping the short term use of Prolia. Interesting that your Dr is suggesting the Evenity >. Prolia > Evenity that my Dr. is/had ordered for me, except the Prolia was to be for 1 year. I have spent over 2 weeks researching for studies or anything that points to this drug sequence as an accepted protocol. There is nothing definitive that states this is ok. I don't want to question my Dr's expertise in Osteoporosis management, but quite honestly I am. I am still waiting for a response from this Dr - nothing so far. Adding the below conclusion of a study.
" In conclusion, romosozumab appears to maintain or improve the gains in BMD after a 12‐month course of denosumab treatment in postmenopausal women with low bone mass, while levels of BTMs gradually return to baseline levels. The sequence of romosozumab after denosumab is not as effective in increasing BMD as is the opposite sequence of using romosozumab first. Larger studies in women at high fracture risk are needed to determine the true clinical impact and utility of the treatment sequence of denosumab followed by romosozumab."

@windyshores @255anny

I did do the Reclast infusion 10 days back. I had taken plenty of water day of and days after. I did take 1000mg Tylenol prior to infusion.

I did not seem to have any side effects. I had a mild fever (under 99 F), a day later for a couple of days. I took some Tylenols. I am not entirely sure I can attribute that to Reclast as I was having similar mild fevers 2 days prior to infusion. I am not sure what to make of it.

Thank you for your advice and support.

thank you ... happy you did ok with it.

@papillon89 sounds like you did well, like many or even most women do. It is a mystery why some do well and some have debilitating effects and it is wonderful that you tolerated it. The hydration surely helped!

Thank you so much for letting us on the forum know!

Update:
I had a very productive appt with my Endo DR. I was expecting a short and to the point appt but wow! She spent 1 hour with me. She loved that I brought in my list of questions and remarked that they were great questions and showed that I had been researching deep. She also mentioned as a Dr, it's very helpful to get those kind of questions and it's questions like mine that are shared at the bone conferences. At that point I realized we were going to be a good fit. We discussed my medication options following Evenity and it was agreed that I should transition to Reclast for 1 infusion, then transition to Evenity again. She wasn't put off that I did not want to go to Prolia right now. Very understanding. Some of my questions involved bone markers and testing. We talked about that for quite some time. We will be using CTX levels to help determine when to start the Reclast. She also will order an additional saline flush after the Reclast infusion. We also discussed the importance of being very well hydrated before and after the infusion. And to take Tylenol before and after. I had a concern about the Reclast attaching or attacking my hip replacement and causing a lot of pain - who knows where I read this. I am so
relieved to have this decision done.