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.

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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!

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@mayblin
@windyshores
That is very interesting. Thank you for the link to that study. I do recognize 2 of the author's names 🙂 So, the treatment sequence my Dr is suggesting is not exactly new or unheard of. My concerns would be, 1). Would the second course of Evenity be enough to hold off the rebounding effect from the Prolia? 2) The very small number of participants in this study.
3) The fact that the increases in BMD were smaller than the initial increases that one gets from the first course of Evenity. 4). After the 2nd course of Evenity, would that be followed by Zolendronate?
I feel somewhat better about this sequence, but doing this kinda makes me feel like I'm doing my own drug study! I wish there was more written about this sequence. The safety aspect appeared ok in the study, so that might be of no high concern. My biggest concern is the rebounding from Prolia. But since the Prolia would be 1 year (2 doses) is the rebounding a risk after just 2 doses? I have read that it can happen after just one dose. Obviously, I have to make a decision. The lack of information about the sequence has me concerned. Of course, I could talk to my Dr but I'd like to be better informed before I do that, so that means I will dig further. Oh gosh, more sleepless nights.
@windyshores and @mayblin - thank you both sooo much.

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@255anny

@mayblin
@windyshores
That is very interesting. Thank you for the link to that study. I do recognize 2 of the author's names 🙂 So, the treatment sequence my Dr is suggesting is not exactly new or unheard of. My concerns would be, 1). Would the second course of Evenity be enough to hold off the rebounding effect from the Prolia? 2) The very small number of participants in this study.
3) The fact that the increases in BMD were smaller than the initial increases that one gets from the first course of Evenity. 4). After the 2nd course of Evenity, would that be followed by Zolendronate?
I feel somewhat better about this sequence, but doing this kinda makes me feel like I'm doing my own drug study! I wish there was more written about this sequence. The safety aspect appeared ok in the study, so that might be of no high concern. My biggest concern is the rebounding from Prolia. But since the Prolia would be 1 year (2 doses) is the rebounding a risk after just 2 doses? I have read that it can happen after just one dose. Obviously, I have to make a decision. The lack of information about the sequence has me concerned. Of course, I could talk to my Dr but I'd like to be better informed before I do that, so that means I will dig further. Oh gosh, more sleepless nights.
@windyshores and @mayblin - thank you both sooo much.

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Keith McCormick ("Great Bones") has apparently been saying that rebound is less severe with 1-3 Prolia shots. I have not heard this directly from him. You can ask your doctor.

I have been told twice that I am "my own protocol" or am a "pioneer" by two doctors. This concerned Evenity after Tymlos. I really don't like hearing that and can relate to your squeamishness about being one of the first to do something. But research has not caught up to what we need to know so I guess if our doctors approve, we have no choice but to try!

You are a monster researcher. I hope you stick around because you are very helpful!

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@255anny

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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@255anny did your dexa report come with TBS? If so, even you didn't have bmd% increase with Forteo, you could compare TBS scores before and after to get a sense whether there were improvements in bones' micro architecture. I read that if the dexa machine that you used didn't have the function but later installed the software, you can ask your old data to be inputted in and TBS score be calculated.

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@255anny

@mayblin
@windyshores
That is very interesting. Thank you for the link to that study. I do recognize 2 of the author's names 🙂 So, the treatment sequence my Dr is suggesting is not exactly new or unheard of. My concerns would be, 1). Would the second course of Evenity be enough to hold off the rebounding effect from the Prolia? 2) The very small number of participants in this study.
3) The fact that the increases in BMD were smaller than the initial increases that one gets from the first course of Evenity. 4). After the 2nd course of Evenity, would that be followed by Zolendronate?
I feel somewhat better about this sequence, but doing this kinda makes me feel like I'm doing my own drug study! I wish there was more written about this sequence. The safety aspect appeared ok in the study, so that might be of no high concern. My biggest concern is the rebounding from Prolia. But since the Prolia would be 1 year (2 doses) is the rebounding a risk after just 2 doses? I have read that it can happen after just one dose. Obviously, I have to make a decision. The lack of information about the sequence has me concerned. Of course, I could talk to my Dr but I'd like to be better informed before I do that, so that means I will dig further. Oh gosh, more sleepless nights.
@windyshores and @mayblin - thank you both sooo much.

Jump to this post

@255anny, you are in a tough position!!! 2 separate sequences to think of. Evenity to a relay then a relay drug back to evenity. There might not be studies available with good number of subjects to show powerful statistical significance since evenity is relatively new. If it is just evenity--> prolia or reclast to be considered, then it'd be a lot easier. Obviously your endo has another round of evenity in mind for you after the relay drug. Hence not only you need to pick a relay drug that you are comfortable with, you need also think about which sequence (prolia -->evenity, or reclast --> evenity) will turn out better, on top of the worrying about potential prolia rebound effect. Toooo much! There are couple publications I read re evenity after 1-2 shots of prolia. It seems bmd increases were dampened but there were increase. There was a paper by Japanese researchers for evenity after reclast but results weren't clearly tabulated since there were other bps involved.

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@mayblin

@255anny, you are in a tough position!!! 2 separate sequences to think of. Evenity to a relay then a relay drug back to evenity. There might not be studies available with good number of subjects to show powerful statistical significance since evenity is relatively new. If it is just evenity--> prolia or reclast to be considered, then it'd be a lot easier. Obviously your endo has another round of evenity in mind for you after the relay drug. Hence not only you need to pick a relay drug that you are comfortable with, you need also think about which sequence (prolia -->evenity, or reclast --> evenity) will turn out better, on top of the worrying about potential prolia rebound effect. Toooo much! There are couple publications I read re evenity after 1-2 shots of prolia. It seems bmd increases were dampened but there were increase. There was a paper by Japanese researchers for evenity after reclast but results weren't clearly tabulated since there were other bps involved.

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Are we allowed more Evenity after a year? That's another reason I stopped at 4 months- so I can have it in the future. Maybe that was not necessary.

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@mayblin

@255anny, you are in a tough position!!! 2 separate sequences to think of. Evenity to a relay then a relay drug back to evenity. There might not be studies available with good number of subjects to show powerful statistical significance since evenity is relatively new. If it is just evenity--> prolia or reclast to be considered, then it'd be a lot easier. Obviously your endo has another round of evenity in mind for you after the relay drug. Hence not only you need to pick a relay drug that you are comfortable with, you need also think about which sequence (prolia -->evenity, or reclast --> evenity) will turn out better, on top of the worrying about potential prolia rebound effect. Toooo much! There are couple publications I read re evenity after 1-2 shots of prolia. It seems bmd increases were dampened but there were increase. There was a paper by Japanese researchers for evenity after reclast but results weren't clearly tabulated since there were other bps involved.

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I'm in a tough spot but maybe I'm making it tougher than I should. The easiest decision would be Reclast next, then with my Dr figure out the next drug. I'm so tired of doing nothing but reading about this. One study always leads to another... If I chose Reclast as my next treatment drug this October, is that usually given for 3 years straight? I'm worried about the side effects and can I make it thru 3 infusions.
I can't figure out what this study is reporting, it seems vague or else just not stating their conclusion.
https://link.springer.com/article/10.1007/s00198-019-05146-9

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@windyshores

Are we allowed more Evenity after a year? That's another reason I stopped at 4 months- so I can have it in the future. Maybe that was not necessary.

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12 mos is the standard as I'm sure you know, From the studies, it seems there has to a break in the treatment drugs between doses of Evinity. I don't have the understanding of exactly what each drug does, builds density or maintains density. Maybe if one continued on Evenity for a longer time the efficacy was diminished

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@mayblin

@255anny did your dexa report come with TBS? If so, even you didn't have bmd% increase with Forteo, you could compare TBS scores before and after to get a sense whether there were improvements in bones' micro architecture. I read that if the dexa machine that you used didn't have the function but later installed the software, you can ask your old data to be inputted in and TBS score be calculated.

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My TBS score was 1.3 L3-L4 were 1.308. TBS T-score was -1.6. TBS Z-Score was 0.4
BMD 0.579

I have no clue how to interpret these numbers. I will have to go back to my first DEXA for that info, if it's on that scan. My scans since that very first one are done on the same machine, same operator and has the TBS scoring in the program. Good point you made, I can try to see if I have that onfo. The Dr did mention my Bone Quality was ok.
My FRAX score, adjusted for TBS is 37.8% for a major fracture. Scary indeed

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@255anny that study is interesting. I noticed it also found that a single dose of zoledronic acid maintained bone density after a second course of Evenity.

The decline in effectiveness if Prolia is used between Evenity courses was disconcerting vs placebo. I wish there was a study on Reclast between Evenity doses! Maybe there is....

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I learned just a year ago I had very poor bone density and can’t have a back surgery because of “poor outcomes per my ortho doc. He had me start with a bone density NP specialist who started me in January on Prolia. But! I can’t continue it and had to decline it last month because in less than 6 months the price went so much higher. My copay would be $300 for each biannual injection. And the drawbacks are very risky to stopping it. I can’t do Fossamax or any similar meds. Doctor says there are few alternatives that are known to work well. I’m reading everything someone shares here for ideas. Am unsure that my NP for bone density really wants to try anything else.

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