High anxiety regarding Reclast or Prolia decison for OP meds

Posted by 255anny @255anny, Aug 18, 2024

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.

I was on Prolia until my hair fell out.
My regime was 2 injections a year. After the 3D injection my hair fell out in great gobs.
At that time, there weren’t any reports of this. There have since been many.
Needless to say, I never had another injection.
2 years later, my hair is growing back.

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Reading 255anny @255anny note above felt was a parallel deja vu. I'm super worried as I wrapped my 12 months of Evenity on October 16 and Endo told me on October 23 that need to decide RIGHT AWAY on Reclast or Prolia and I am staying up all night trying to assess. I too had bad Spine Dexa -4.0 (L3) and -4.3 (L4) so Endo put me straight on Evenity. Thankfully no side effects. But now what? It all sounds so ominous and high stakes. My Endo said "we'll do a Dexa in January" and never ordered a CTX or PNP test (which I've seen referenced here) but all this seems too late given I have to make decision on Reclast or Prolia in coming days?! Any insights any of you wonderful folks on this chat found would be very welcome!

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Profile picture for mayapath2health @mayapath2health

Reading 255anny @255anny note above felt was a parallel deja vu. I'm super worried as I wrapped my 12 months of Evenity on October 16 and Endo told me on October 23 that need to decide RIGHT AWAY on Reclast or Prolia and I am staying up all night trying to assess. I too had bad Spine Dexa -4.0 (L3) and -4.3 (L4) so Endo put me straight on Evenity. Thankfully no side effects. But now what? It all sounds so ominous and high stakes. My Endo said "we'll do a Dexa in January" and never ordered a CTX or PNP test (which I've seen referenced here) but all this seems too late given I have to make decision on Reclast or Prolia in coming days?! Any insights any of you wonderful folks on this chat found would be very welcome!

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@mayapath2health
As we know, it’s important to follow up with an antiresorptive therapy to help preserve (or “lock in”) the bone gains after Evenity. From what I’ve gathered, there are two scenarios to consider:

Treatment target reached - based on BMD improvements, T-score, and FRAX score. Options include:
• Reclast or other antiresorptives, depending on preference;
• Short-term (1–2 yrs) Prolia followed by Reclast. Some endos do this, as Prolia may further improve BMD per clinical studies;
• Long-term Prolia: requires ongoing commitment; stopping abruptly carries a risk of rebound bone loss

When treatment target not reached or fracture risk remains high:
Another round of anabolic therapy may be considered. This is trickier, as clinical data are limited. Some go directly from one anabolic to another; others use a bridging agent. I think @255anny may fall into this category.

To make the best choice, you’d ideally need a DEXA scan now (after Evenity) to guide your next step imo.

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I am right there with you. Eager to read replies as I have the same decision to make in Jan. Another option i was given in lieu of reclast is alendronate, taken orally

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I see the endocrinologist tomorrow. I think he prescribes reclast. Saw my PCP yesterday and her protocol is prolia. Wish i had thought to ask her why.

After a year on evenity i’m osteopenic everywhere except the left femur. I’m just below the osteopenia range. Whatever I do to lock in the gains (they were largest in the spine) does that mean i will no longer build bone? Hoping my weight lifting will continue to help.

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I am also with you all and anxious to hear what you do. I have 4 more months of Evenity. So many tell me don't do Prolia but seems like several does it and they do fine?

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Profile picture for grammy9 @grammy9

I am also with you all and anxious to hear what you do. I have 4 more months of Evenity. So many tell me don't do Prolia but seems like several does it and they do fine?

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@grammy9

I think the short-term use of Prolia after Evenity is based on clinical studies (see graph below).

Sometimes trial data don’t necessarily translate perfectly to real life experience. Responses can vary, and if Prolia doesn’t seem to add much additional bone density after Evenity, that’s when your doctor might reassess the next step.

Short-term Prolia is usually followed by Reclast (or sometimes Fosamax) to prevent rebound bone loss when Prolia is stopped.

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Thank you so much for prompt response mayblin (@mayblin). I just wrapped 12 months of Evenity last month, not sure why my endo didn't request a mid-stream Dexa but going in for one today. Highly doubt it will meet "target" (and not sure what the target is in my case) as my scores were so bad ("severe osteoporosis") in first Dexa: L1 T-score -2.6, L2 -3.7, L3 -4.0, L4 -4.3; Left neck -2.9; Left hip -2.4; and FRAX 10 year probability of fracture: “not reported because some T scores…below 2.5”. So wondering if a second round of Evenity is going to be the recommended path--noting you say this is "tricky". I did just get a CTX test last month (801 pg/mL down from 1111 in May 2024). Have never done/heard of a PINP or phosphorus test to best of my knowledge--perhaps I should request? My big concern now is that I had last Evenity on 10/16 and am told need to start either Prolia or Reclast within 4 weeks which is next week! I'm 63, early menopause (@44) and never took HRTs (regretting that), have good insurance. Going in to a different Endo this afternoon for second opinion. Welcome any recommended questions to ask or tests to request!

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Profile picture for mayblin @mayblin

@grammy9

I think the short-term use of Prolia after Evenity is based on clinical studies (see graph below).

Sometimes trial data don’t necessarily translate perfectly to real life experience. Responses can vary, and if Prolia doesn’t seem to add much additional bone density after Evenity, that’s when your doctor might reassess the next step.

Short-term Prolia is usually followed by Reclast (or sometimes Fosamax) to prevent rebound bone loss when Prolia is stopped.

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@mayblin
What I don't understand is how do they know? My doctor just seems to do a bone density every 2 years. I would think these would need to be done much more often.

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Profile picture for mayapath2health @mayapath2health

Thank you so much for prompt response mayblin (@mayblin). I just wrapped 12 months of Evenity last month, not sure why my endo didn't request a mid-stream Dexa but going in for one today. Highly doubt it will meet "target" (and not sure what the target is in my case) as my scores were so bad ("severe osteoporosis") in first Dexa: L1 T-score -2.6, L2 -3.7, L3 -4.0, L4 -4.3; Left neck -2.9; Left hip -2.4; and FRAX 10 year probability of fracture: “not reported because some T scores…below 2.5”. So wondering if a second round of Evenity is going to be the recommended path--noting you say this is "tricky". I did just get a CTX test last month (801 pg/mL down from 1111 in May 2024). Have never done/heard of a PINP or phosphorus test to best of my knowledge--perhaps I should request? My big concern now is that I had last Evenity on 10/16 and am told need to start either Prolia or Reclast within 4 weeks which is next week! I'm 63, early menopause (@44) and never took HRTs (regretting that), have good insurance. Going in to a different Endo this afternoon for second opinion. Welcome any recommended questions to ask or tests to request!

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@mayapath2health
It is great that you’re getting a timely DEXA. Hopefully the results will be available for your appointment with the new endo.

To me your CTX looks quite high right after completing 12mo Evenity, though your baseline CTX was very high. Without a corresponding P1NP, it’s hard to tell whether this is balanced high bone turnover or active bone loss, definitely ask about this at your appointment.

FRAX score can be calculated by using: https://www.fraxplus.org/calculation-tool

Many endocrinologists use FRAX in complicated cases to guide treatment decisions.

It’s easier for a decision if you just need to lock in gains.

If you need more bmd improvement based on your new endo’s assessment, it becomes a lot trickier. If this is the case, discuss all possible route, including the usual Reclast/prolia, the lesser used risedronate/raoxifene/estrogen and tymlos/forteo, for continued bmd improvements or as a “bridging” agent.

I’d also make sure there’s an open line of communication with your new endo, sometimes these visits go by quickly, and it’s hard to cover everything in one session, especially if follow-up appointments are months out.

Best of luck!

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