High anxiety regarding Reclast or Prolia decison for OP meds

Posted by 255anny @255anny, Aug 18 5:01pm

I am overwhelmed with making this decision. Currently on Evenity, 2 more injections left. Severe Osteporosis. Spine -4.7. I left my OP Dr's office last week with an order for Prolia starting Oct/Nov. And blood work orders. We did discuss Prolia vs Reclast but I didn't ask enough questions I guess, despite having a 1 hour appt with her. I did know and told her I feared Prolia. She relayed how much easier it was than Reclast. And the Reclast stays in your system much longer. She wrote the RX for Prolia for 1 year, then relay to Evenity again. That does not sound right to me. I can't find any studies supporting that drug sequencing. This Dr is new to me but in the practice of the most respected Endo offices in my state. She only see OP patients. I am staying up til 3am every night reading and researching. There is no right answer.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Not sure except my Endo put in Reclast infusion once a year for 3 yrs.
Did the first reclast 15 min infusion last week for osteoporosis huge change because 1 yr post kidney transplant w Mayo Clinic AZ due to anti rejection meds significant change before transplant w monitored bone density scan before transplant and monitored throughout. Mayo’s 1 yr check up in July w bone density scan again.
I truly trust my Endo
when she explained options and she read Post Transplant papers for providers what what we can and cannot have - for other conditions what can occur and what’s allowed.
Reclast infusion was no problem except infusion nurses hands paper and tells you - can feel tired 24 hrs for me. It was fine. But I am not an expert on your case or know those other drug names. Get a second opinion if unsure

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@255anny,
I share your fears. These articles may be more reassuring than they should be.
Rcclast certainly stays in your body longer. It invades your bones and offers fracture prevention for years.
Prolia is completely gone after six months after which it provides no protection, but much greater risk of fracture if it isn't followed by an antiresorptive.
Some have extreme reactions to the drugs, but not everyone.
https://www.mdedge.com/rheumatology/article/231405/osteoporosis/treatment-sequence-romosozumab-influences-osteoporosis
Amgen produces both Evenity and Prolia and there is big advertising encouraging doctors to use them in sequence.
https://www.evenityproliahcp.com/
You might have the labs done right away and see if they lead you in any direction. Have they ordered the bone markers CTX and P1NP. If not, you might request them.
You might pause until you have bone density results.
In every fine institution there are less than fine physicians, not to reflect on your new doctor, who may really be a new doctor.
"That does not sound right to me," is the most interesting part of your post. I agree.
I would have bone markers first to decide if I even want the next two Evenity injections.
I'd sooner see you on Reclast than Prolia. There is the windyshore's way of having a smaller dose of Reclast to determine any reaction you might have.
Mayo connect is a good source of information. Most of us have experienced those 3am readings. Stay with us, ask everything. Meanwhile be careful-- no lifting especially no lifting while twisting and no falling.

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If you do Prolia for 1-3 shots, Keith McCormick, author of "Great Bones" has mentioned that the Prolia rebound will be more gentle and can be handled with Reclast or even Fosamax.

When Prolia is stopped, as you probably know, there is a "rebound" with drop in bone density and rise in fracture risk as the dormant osteocytes wake up. Other meds need a bisphosphonate to "lock in" gains but my doctor says it is especially important with Prolia (in fact my doctors rarely use Prolia due to rebound).

With -4.7 at the start, can you have a scan to see where you are now? Maybe your doctor intends one year Prolia, then Reclast then a repeat Evenity? Or Prolia, Reclast and Tymlos or Forteo?

We need more research! Evenity came on the market in 2019 and is so new. The company suggests Prolia after Evenity but generally the info I read and see says that after Prolia you have to do a bisphosphonate ("Great Bones," various videos on YouTube including Ben Leder's "Combining and Sequencing Approaches to Osteoporosis."

Leder says Prolia is quite potent to build bone density and the only issue is with stopping. I don't see how Evenity would stop rebound, but that is speculative and your doctor can discuss this with you. Maybe they have new info. Let us know!

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@gently

@255anny,
I share your fears. These articles may be more reassuring than they should be.
Rcclast certainly stays in your body longer. It invades your bones and offers fracture prevention for years.
Prolia is completely gone after six months after which it provides no protection, but much greater risk of fracture if it isn't followed by an antiresorptive.
Some have extreme reactions to the drugs, but not everyone.
https://www.mdedge.com/rheumatology/article/231405/osteoporosis/treatment-sequence-romosozumab-influences-osteoporosis
Amgen produces both Evenity and Prolia and there is big advertising encouraging doctors to use them in sequence.
https://www.evenityproliahcp.com/
You might have the labs done right away and see if they lead you in any direction. Have they ordered the bone markers CTX and P1NP. If not, you might request them.
You might pause until you have bone density results.
In every fine institution there are less than fine physicians, not to reflect on your new doctor, who may really be a new doctor.
"That does not sound right to me," is the most interesting part of your post. I agree.
I would have bone markers first to decide if I even want the next two Evenity injections.
I'd sooner see you on Reclast than Prolia. There is the windyshore's way of having a smaller dose of Reclast to determine any reaction you might have.
Mayo connect is a good source of information. Most of us have experienced those 3am readings. Stay with us, ask everything. Meanwhile be careful-- no lifting especially no lifting while twisting and no falling.

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Thank you for your help. I had to ask for the bone markers, she ordered P1NP but not the CTX. I asked about that and she said she didn't use that. Okkkk. But I can ask again. Or I'll pay to get it myself. My DEXA scan was the same day as my appt with her, last week. My pitiful gain was from -5.2 to -4.7 in my spine. But my bone quality was ok. This Dr has been an Endo for quite some time. She is just new to this prestigious Endo practice. This marketing campaign of Amgen's is doing us no favors. I noticed she had pamphlets and bone models in her office. I think I've read your smaller dose variation - sounds interesting. I did well on both Forteo and Evenity, no lingering side effects. But this next step is truly scaring me. Thank you!!

REPLY
@windyshores

If you do Prolia for 1-3 shots, Keith McCormick, author of "Great Bones" has mentioned that the Prolia rebound will be more gentle and can be handled with Reclast or even Fosamax.

When Prolia is stopped, as you probably know, there is a "rebound" with drop in bone density and rise in fracture risk as the dormant osteocytes wake up. Other meds need a bisphosphonate to "lock in" gains but my doctor says it is especially important with Prolia (in fact my doctors rarely use Prolia due to rebound).

With -4.7 at the start, can you have a scan to see where you are now? Maybe your doctor intends one year Prolia, then Reclast then a repeat Evenity? Or Prolia, Reclast and Tymlos or Forteo?

We need more research! Evenity came on the market in 2019 and is so new. The company suggests Prolia after Evenity but generally the info I read and see says that after Prolia you have to do a bisphosphonate ("Great Bones," various videos on YouTube including Ben Leder's "Combining and Sequencing Approaches to Osteoporosis."

Leder says Prolia is quite potent to build bone density and the only issue is with stopping. I don't see how Evenity would stop rebound, but that is speculative and your doctor can discuss this with you. Maybe they have new info. Let us know!

Jump to this post

I have Keith's book so I will check that out. Even with just 2 injections of Prolia, I've read there can be issues with the rebounding effects. I've watched OP conference presentations til I'm blue in the face. I've read so much. If I don't understand something, I Google it. Thanks for the YouTube suggestions - going there now.

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Hi @255anny if I understood your sequence correctly: forteo-->evenity x1yr-->proposed prolia x 1year--> proposed evenity again, this article by Dr. McClung might be worth reading as a starting point:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8260819/#jbm410512-bib-0014
Please look at Fig 1, part A for "phase 2 study and extension". Your sequence resembles line 5, which was evenity x2yr -->prolia x1yr --> evenity x1yr in that study. Total of 52 patients were involved in that particular arm. Then follow what the authors had referenced, #14, #17 and #18 articles will give you a total picture of what happened with bmds as well as btms for that sequence in the study. Happy reading and best luck!

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@mayblin

Hi @255anny if I understood your sequence correctly: forteo-->evenity x1yr-->proposed prolia x 1year--> proposed evenity again, this article by Dr. McClung might be worth reading as a starting point:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8260819/#jbm410512-bib-0014
Please look at Fig 1, part A for "phase 2 study and extension". Your sequence resembles line 5, which was evenity x2yr -->prolia x1yr --> evenity x1yr in that study. Total of 52 patients were involved in that particular arm. Then follow what the authors had referenced, #14, #17 and #18 articles will give you a total picture of what happened with bmds as well as btms for that sequence in the study. Happy reading and best luck!

Jump to this post

Thank you. As I have been digging thru so many studies, I’ve seen maybe 2 mentions of using an anabolic as a relay off of short term Prolia. But the studies usually end with “ further studies need to happen”. Thank you for sharing some more info. I will read.

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@255anny

Thank you. As I have been digging thru so many studies, I’ve seen maybe 2 mentions of using an anabolic as a relay off of short term Prolia. But the studies usually end with “ further studies need to happen”. Thank you for sharing some more info. I will read.

Jump to this post

255anny,
did you have gains with Forteo? side effects? Would you take it again?

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From the link posted by @mayblin- very interesting!

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.

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@gently

255anny,
did you have gains with Forteo? side effects? Would you take it again?

Jump to this post

No gains with Forteo. I had no side effects. The only negative I have with Forteo is that it has to be kept cool. That made it difficult to travel, but I always found a way.

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