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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Ok, I'm getting closer to finding a direction I need to go. But I am still very confused, especially after all the reading I've done and all the videos I've watched. Just to recap - in my last 2 months of Evenity, -4.7 Spine. Already used Forteo for 2 years. (initial drug used) I now need to move forward with a new drug. Dr suggests Prolia for 1 year then back to Evenity. (then what!!) I'm not crazy about the Prolia. Even at just 2 injections, there have been some findings of rebounding effects. But normally, Reclast is the relay drug, not Evenity as my Dr is suggesting. My guess is she thinks at just the 2 injections I'd have nothing to worry about regarding the rebounding. But I honestly don't think I could live with that risk. I'd be worrying every day. Sooo, after some reading, I thought ok maybe lets move forward to Reclast. But, my gains from Evenity are not great, do I want a drug to hold in the gains, even if they are small? Maybe my Dr's suggestion of Prolia is on target? Ugh. I'm driving myself nuts trying to figure this out. I realize I can't do this alone and of course need a Dr's advice. But her suggestion of Prolia to Evenity really bothers me. And dare I say makes me question the safety of that! Maybe Forteo again? I have GI issues, so oral meds are questionable.

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i’m curious to hear what’s so much easier about Prolia—its two injections annually vs one Reclast infusion annually. Also, it’s my understanding that reclast tends to have better results…..I had two significant improvements from reclast.

It seems soooo many physicians push prolia. i have yet to be told that apparently prolia has a black box warning of potential SERIOUS adverse effects (if i remember correctly—broken vertebrae) and then there is a warning that if a patient stops taking prolia there could suddenly be dire consequences. My personal decision, is no prolia for me.

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Just so you know…there is a national shortage of endochronologists. There is a sign up in the endocrinology practice at Cleveland Clinic informing clients about the national endo shortage. From friends who have done specialty training in Medicine—i know it’s usually very difficult to get Residency’s (and/or fellowships) in good medical institutions. But what a dream come true for a mediocre medical student—an entry into a speciality residency and great prospects for long term career opportunities.

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@255anny

Ok, I'm getting closer to finding a direction I need to go. But I am still very confused, especially after all the reading I've done and all the videos I've watched. Just to recap - in my last 2 months of Evenity, -4.7 Spine. Already used Forteo for 2 years. (initial drug used) I now need to move forward with a new drug. Dr suggests Prolia for 1 year then back to Evenity. (then what!!) I'm not crazy about the Prolia. Even at just 2 injections, there have been some findings of rebounding effects. But normally, Reclast is the relay drug, not Evenity as my Dr is suggesting. My guess is she thinks at just the 2 injections I'd have nothing to worry about regarding the rebounding. But I honestly don't think I could live with that risk. I'd be worrying every day. Sooo, after some reading, I thought ok maybe lets move forward to Reclast. But, my gains from Evenity are not great, do I want a drug to hold in the gains, even if they are small? Maybe my Dr's suggestion of Prolia is on target? Ugh. I'm driving myself nuts trying to figure this out. I realize I can't do this alone and of course need a Dr's advice. But her suggestion of Prolia to Evenity really bothers me. And dare I say makes me question the safety of that! Maybe Forteo again? I have GI issues, so oral meds are questionable.

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May i ask? What is a relay drug?

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@elisabeth007

May i ask? What is a relay drug?

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How about getting a second opinion?

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@elisabeth007

How about getting a second opinion?

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Yes, I've considered that. But I need to transition to my next drug soon. And finding a good Endo is very difficult. I am asking around though.

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@255anny

Yes, I've considered that. But I need to transition to my next drug soon. And finding a good Endo is very difficult. I am asking around though.

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Didn't someone post about a study on Evenity after Prolia that showed no rebound and small increases in spine? The question is, are those small gains less than what would happen after Reclast as relay after the first Evenity.

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@windyshores

Didn't someone post about a study on Evenity after Prolia that showed no rebound and small increases in spine? The question is, are those small gains less than what would happen after Reclast as relay after the first Evenity.

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I might be the one who posted that link, but can't recall in which thread. It was in a discussion related to @hopefullibrarian that's all I could remember.

@255anny attached please find graphs for bmd% increase on 24mo straight evenity along with btm changes, should you consider that as an option.
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2024/04/Osteoporosis-Medications-V1.4.jpg

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@255anny

Ok, I'm getting closer to finding a direction I need to go. But I am still very confused, especially after all the reading I've done and all the videos I've watched. Just to recap - in my last 2 months of Evenity, -4.7 Spine. Already used Forteo for 2 years. (initial drug used) I now need to move forward with a new drug. Dr suggests Prolia for 1 year then back to Evenity. (then what!!) I'm not crazy about the Prolia. Even at just 2 injections, there have been some findings of rebounding effects. But normally, Reclast is the relay drug, not Evenity as my Dr is suggesting. My guess is she thinks at just the 2 injections I'd have nothing to worry about regarding the rebounding. But I honestly don't think I could live with that risk. I'd be worrying every day. Sooo, after some reading, I thought ok maybe lets move forward to Reclast. But, my gains from Evenity are not great, do I want a drug to hold in the gains, even if they are small? Maybe my Dr's suggestion of Prolia is on target? Ugh. I'm driving myself nuts trying to figure this out. I realize I can't do this alone and of course need a Dr's advice. But her suggestion of Prolia to Evenity really bothers me. And dare I say makes me question the safety of that! Maybe Forteo again? I have GI issues, so oral meds are questionable.

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255anny,
if I were in your situation I would take Tymlos. It is an anabolic very like Forteo, but thought to be more effective than Forteo in the spine.
windyshoes' interesting speculation that perhaps the increase from a new medication may supercede whatever loss there might be with the relay drug. ( Windyshores is an experienced Tymlos user and offers invaluable advice about taking the medication. )
I applaud your fears about the pharmaceuticals osteoporosis patients are sometimes pressured to take.
If I encountered resistance to efforts to obtain Tymlos, I would happily take a second round of Forteo. Oh, said to be "as robust as the first."
I would definitely want P1NP and CTX before and two months in with Tymlos to ascertain that it is working.
I'm not addressing any "need" for advice to take Prolia/Evenity/Prolia, but listen to yourself.
Bless your choice.
gently

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@mayblin

I might be the one who posted that link, but can't recall in which thread. It was in a discussion related to @hopefullibrarian that's all I could remember.

@255anny attached please find graphs for bmd% increase on 24mo straight evenity along with btm changes, should you consider that as an option.
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2024/04/Osteoporosis-Medications-V1.4.jpg

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Thank you!
Trying to break that down in my head 🙂

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