1. < Osteoporosis & Bone Health

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.

windyshores | @windyshores | Aug 23 9:04am

@255anny can you list your medications and time on each? 2 years Reclast, 2 years Forteo, one year Evenity? So now you are figuring out next medication. What is your current DEXA? Do you have one MD opinion at this point, and that is for Prolia. I feel like I have gotten bits and pieces somehow....

REPLY
1 reply
hopefullibrarian | @hopefullibrarian | Aug 23 9:18am
In reply to @mayblin "I might be the one who posted that link, but can't recall in which thread. It..." + (show)
@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

Jump to this post

Maybe this is the link you're talking about[?]. It addresses the effectiveness of Evenity following Prolia as well as that of alendronate, risedronate, and zoledronic acid.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
Here's a snippet:
"When administered after denosumab in postmenopausal women with low BMD, romosozumab increased BMD in the lumbar spine by 2.3% and maintained BMD in the hip, although the increase was of a smaller magnitude than that observed in treatment-naïve patients."

REPLY
1 reply
mayblin | @mayblin | Aug 23 9:48am
In reply to @hopefullibrarian "Maybe this is the link you're talking about[?]. It addresses the effectiveness of Evenity following Prolia..." + (show)
@hopefullibrarian

Maybe this is the link you're talking about[?]. It addresses the effectiveness of Evenity following Prolia as well as that of alendronate, risedronate, and zoledronic acid.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
Here's a snippet:
"When administered after denosumab in postmenopausal women with low BMD, romosozumab increased BMD in the lumbar spine by 2.3% and maintained BMD in the hip, although the increase was of a smaller magnitude than that observed in treatment-naïve patients."

Jump to this post

Thank you very much @hopefullibrarian ! This could be handy for @255anny .

REPLY
1 reply
255anny | @255anny | Aug 23 10:15am
In reply to @windyshores "@255anny can you list your medications and time on each? 2 years Reclast, 2 years Forteo,..." + (show)
@windyshores

@255anny can you list your medications and time on each? 2 years Reclast, 2 years Forteo, one year Evenity? So now you are figuring out next medication. What is your current DEXA? Do you have one MD opinion at this point, and that is for Prolia. I feel like I have gotten bits and pieces somehow....

Jump to this post

2 years Forteo - no gains DEXA at the end of that medication was either -5.1 or -5.2

1 year of Evenity (2 shots left basically). DEXA last week was -4.7
TBS score showed borderline ok
FRAX score was 38% risk of a major OP fracture
Yes, now I am trying to find the next drug that is best for me and my situation. I do have a Endo Dr that specializes in OP. Her current suggestion moving forward is 1 yr Prolia >1 yr Evenity.
I'm not comfortable with the Prolia.

REPLY
1 reply
gildam | @gildam | Aug 23 10:23am

Me too. I’m on BHRT IT HAS MADE AN IMPACT.

REPLY
kristie2 | @kristie2 | Aug 23 10:44am
In reply to @255anny "Ok, I'm getting closer to finding a direction I need to go. But I am still..." + (show)
@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.

Jump to this post

From my understanding even 1 or 2 doses of Prolia can build bone density. I was on Evenity for a year and now I will have 2 injections of Prolia and move on to reclast. Sorry to hear that the Evenity did not work for you . I had really good gains but I was also on hormone replacement.

REPLY
windyshores | @windyshores | Aug 23 3:08pm
In reply to @255anny "2 years Forteo - no gains DEXA at the end of that medication was either -5.1..." + (show)
@255anny

2 years Forteo - no gains DEXA at the end of that medication was either -5.1 or -5.2

1 year of Evenity (2 shots left basically). DEXA last week was -4.7
TBS score showed borderline ok
FRAX score was 38% risk of a major OP fracture
Yes, now I am trying to find the next drug that is best for me and my situation. I do have a Endo Dr that specializes in OP. Her current suggestion moving forward is 1 yr Prolia >1 yr Evenity.
I'm not comfortable with the Prolia.

Jump to this post

@255anny Your situation is a bit of an outlier. Your scores are not great but your TBS is borderline okay. As you know I fractures at -3.7 but the unwise movement was pretty darn unwise!

The other outlier is your lack of response to Forteo. Did anyone investigate why? Is your parathyroid okay? I feel bad for you that you injected 365 x 2 mornings with no results.

Your response to Evenity was much better if not dramatic, around 10%. Are these spinal scores?

Prolia may be a good med for you. If I were in my 80's (getting there!) I would do that. It seems really key for you to somehow get back to Evenity and clearly Prolia will blunt the response to that.

What happens if you take a break and then do Evenity again? How much of a break is needed for its anabolic first month or two to happen. I just feel like the science is SO far behind what we need!

If nothing else, with all your intelligent research and questions, you may be able to have a useful conversation with your doctor. I saw two doctors when I was confused, as well as Keith McCormick (you could ask him- he knows a lot). When I had cancer I got 4 opinions!

Let us know! ps Is there reason to believe Tymlos might help more than Forteo, especially with better calcium and Vitamin D3.

REPLY
255anny | @255anny | Aug 23 3:32pm

Crazy moves scare me and I try so hard not to do anything that might fracture a bone. After my hip replacement 7 years ago, I'm pretty cautious of "external rotation" !

I honestly think my lack of gains on Forteo was due to gut issues, basically no nutrition. I survived on scrambled eggs, chicken soup, crackers and applesauce for a very long time. I could not get help, during Covid. But I'm better now! Just left with some SIBO issues.

I hate that I injected that Forteo everynight and got nothing! I know I brought this up with my Endo Dr and he acknowledged it but didn't offer much help. All my blood tests came back normal, so I guess to him whatever was wrong, he didn't want to get into it.

I am 69, 112 lbs. 5'6". thin, no muscle, Always been thin. My back hurts all the time. Seeing my Ortho Dr in a few weeks and I've already asked for another (!) MRI.

If I take a break now, wouldn't I lose my gains from the Evenity? I am reading Dr McCormick's Great Bones - chapter 14 is fantastic! Lots of solid info. Also searching for interviews with him on YouTube. This one is pretty good. https://www.youtube.com/watch?v=eZIgvcM9Ous. I emailed my Endo Dr's nurse yesterday asking for some time with the Dr. I've heard nothing back. It's so frustrating, I want my leisure time back! 🙂

REPLY
1 reply
windyshores | @windyshores | Aug 23 4:22pm
In reply to @255anny "Crazy moves scare me and I try so hard not to do anything that might fracture..." + (show)
@255anny

Crazy moves scare me and I try so hard not to do anything that might fracture a bone. After my hip replacement 7 years ago, I'm pretty cautious of "external rotation" !

I honestly think my lack of gains on Forteo was due to gut issues, basically no nutrition. I survived on scrambled eggs, chicken soup, crackers and applesauce for a very long time. I could not get help, during Covid. But I'm better now! Just left with some SIBO issues.

I hate that I injected that Forteo everynight and got nothing! I know I brought this up with my Endo Dr and he acknowledged it but didn't offer much help. All my blood tests came back normal, so I guess to him whatever was wrong, he didn't want to get into it.

I am 69, 112 lbs. 5'6". thin, no muscle, Always been thin. My back hurts all the time. Seeing my Ortho Dr in a few weeks and I've already asked for another (!) MRI.

If I take a break now, wouldn't I lose my gains from the Evenity? I am reading Dr McCormick's Great Bones - chapter 14 is fantastic! Lots of solid info. Also searching for interviews with him on YouTube. This one is pretty good. https://www.youtube.com/watch?v=eZIgvcM9Ous. I emailed my Endo Dr's nurse yesterday asking for some time with the Dr. I've heard nothing back. It's so frustrating, I want my leisure time back! 🙂

Jump to this post

@255anny I have wondered if there is any rebound or loss if we stop Evenity since it is anti-resorptive for the last months, but mildly so. I don't think they know. They don't know if Tymlos after Evenity is good idea either. No data.

If your scores were better then the path of Prolia then Evenity would seem to be the best. The Prolia may blunt the Evenity but it also may give you a boost. I hope you can talk to your doctor. Can you get in for an appointment?

Talking to McCormick might be helpful but he is pretty booked out I think. I wonder if there is another doctor you could consult, someone you like on all those videos!

REPLY
View MoreView Less
Please sign in or register to post a reply.