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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@255anny

It is my understanding that Evenity has a small amount of antiresorptive qualities. But don't quote me on that. But the big question is - is that antiresorptive enough to hold off the rebound effect from the Prolia?

I am finishing up Evenity now, 2 more injections. No issues at all.
I'm considering Reclast next.
My drug sequence has been - Forteo > Evenity, and now either Reclast or Prolia
regarding the long term effects of Evenity, I just don't know.

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@255anny I did 2 years Tymlos (7/8 dose), 4 months Evenity (2 sessions with one shot), and now Reclast 1/5 dose every three months.

I do wonder if one year Prolia will be used more by my doctors before the Reclast but right now they aren't using Prolia much.

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@windyshores

@mayblin so Evenity takes care of rebound after 1 year Prolia?
With the sequence Evenity-Prolia- Evenity , is Reclast used afterwards?

I am still nervous that Evenity has not been adequately researched or tried out on the market. I am satisfied about cardiovascular risks, which were well-researched and don't seem concerning despite the warning. But bone marrow inflammation and effects on B cell acquired immunity have not been well-studied, not to mention the long term effects on joints.

Basically we do best if we do anabolic first. Yup. Andy maybe it is better to take a break after Tymlos or Evenity if doing a second course, without locking in with Reclast, Fosamax or doing Prolia.

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@windyshores i think a successful prolia withdrawal (prevention of rebound) will be fracture free as first measure, then bmd preservation. Most popular measure to prevent rebound seems reclast infusion. Some review papers showed there were some failures (as measured by fracture incidence) with the use of reclast. The McClung/Kendler paper showed dampened effects of evenity after 2 shots of prolia. I didn't read the whole publications so I'm not sure if fractures were reported in this sequence study. Even if they occurred, the small number of subjects involved may not lead to any statistical significance. I didn't dig into the evenity->reclast-->evenity sequence. Only came across one study by Japanese researchers. But they mixed reclast with other bps and I couldn't figure out a clear answer. I thought you or someone else mentioned awhile back re a clinical trial was going on for evenity to reclast to evenity sequence.

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@mayblin

I'm confused now. We know that you had Forteo (done), then Evenity (now and 2 more months left). We are discussing the next realy drug (prolia vs reclast) then a proposed second round of Evenity by your endo. Yes, no?

If the second round of evenity is not in the picture, a decision between reclast vs prolia is a lot less complicated now I suppose.

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Yes we are discussing the next drug after my current Evenity. Dr is suggesting the sequence of:
Prolia for 1 year > Evenity

She did not indicate what to use after the 2nd course of Evenity, if I chose the sequence of Prolia > Evenity.
I'm sorry for all the confusion. I'm kinda leaning towards the Reclast as my next drug.

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@mayblin

@windyshores i think a successful prolia withdrawal (prevention of rebound) will be fracture free as first measure, then bmd preservation. Most popular measure to prevent rebound seems reclast infusion. Some review papers showed there were some failures (as measured by fracture incidence) with the use of reclast. The McClung/Kendler paper showed dampened effects of evenity after 2 shots of prolia. I didn't read the whole publications so I'm not sure if fractures were reported in this sequence study. Even if they occurred, the small number of subjects involved may not lead to any statistical significance. I didn't dig into the evenity->reclast-->evenity sequence. Only came across one study by Japanese researchers. But they mixed reclast with other bps and I couldn't figure out a clear answer. I thought you or someone else mentioned awhile back re a clinical trial was going on for evenity to reclast to evenity sequence.

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The study I saw had Evenity for 6 months then Reclast for 12 months vs Evenity 12 months plus Reclast 12 months and maybe a few other arms. The point was to assess whether Reclast, as an antiresorptive, was as effective as the anti-resorptive last months of Evenity. As I wrote somewhere, they apparently did not know that Evenity's dramatic initial anabolic bone-building petered out rather quickly.

I saw reference to the idea of using Evenity for a quick boost with bisphosphonates between the Evenity- maybe 4-6 months Evenity? It was not a study but a speculation as I remember.

I wish I had a time machine and could travel in the future to see what protocols settle as most effective because right now we are kind of stuck with what we have.

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@255anny

Yes we are discussing the next drug after my current Evenity. Dr is suggesting the sequence of:
Prolia for 1 year > Evenity

She did not indicate what to use after the 2nd course of Evenity, if I chose the sequence of Prolia > Evenity.
I'm sorry for all the confusion. I'm kinda leaning towards the Reclast as my next drug.

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@255anny no problem. I think I'm making myself confused here 🙂

Then really it comes down to which antiresorptive as a relay in between the two rounds of evenity is better. That's the big question. You'd have a better picture if you could find evenity-->reclast-->evenity study. Then compare which relay drug attenuated evenity's effects less. Head to head studies are likely non existent. Your endo might know a lot info about the differences in results between the two.

Hypothetical questions to both you and @windyshores, can you just go straight for a 2nd year of evenity if can get prior authorization (an after thought: it seems 12-24mo bmd increase not that much if used continously for 2 yrs)? Why a full year antiresorptive? Can you do 1 shot of prolia (a lot safer) or 1/2 dose reclast, i.e., a 6mo antiresorptive then to 2nd round evenity?

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@mayblin

@255anny no problem. I think I'm making myself confused here 🙂

Then really it comes down to which antiresorptive as a relay in between the two rounds of evenity is better. That's the big question. You'd have a better picture if you could find evenity-->reclast-->evenity study. Then compare which relay drug attenuated evenity's effects less. Head to head studies are likely non existent. Your endo might know a lot info about the differences in results between the two.

Hypothetical questions to both you and @windyshores, can you just go straight for a 2nd year of evenity if can get prior authorization (an after thought: it seems 12-24mo bmd increase not that much if used continously for 2 yrs)? Why a full year antiresorptive? Can you do 1 shot of prolia (a lot safer) or 1/2 dose reclast, i.e., a 6mo antiresorptive then to 2nd round evenity?

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@mayblin Reclast does decrease effectiveness of Evenity. I wish there were studies on low dose, one year, 6 months etc. and how much of a break is needed to maximize effectiveness of an anabolic or Evenity after Reclast, whether a first or second course of the anabolic.

My doctors aren't even discussing repeats of Evenity though at one point my doctor said he wanted to save Evenity in case it was needed later (after Tymlos and Reclast). I still have 8 months left of that first year!

I like the idea of "treat to target" but some of are just not going to get there and maintenance will be the main goal. Not sure when that will happen for me, personally. I want another shot at an anabolic or Evenity!

I would not do two consecutive years of any of the anabolics but Evenity's amabolic action seems to fade faster than that of Tymlos or Forteo. The potency of it for the remaining months is a mystery. Perhaps that quick large jump in P1NP takes a long time to mineralize. My doc says they don't know.

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@windyshores

@cobalt can you do Reclast? Generally we have been told to do a bisphosphonate to deal with Prolia rebound but there was some info on one thread here that Evenity helped maintain and even grow bone a small amout (2.3% as I remember) after Prolia. That was a study that may not yet be in practice but if you have no alternatives, maybe your doctor would try it, I have read ("Great Bones") and been told (doctors, and Ben Leder's video on YouTube on Combining and Sequencing Approaches) that Forteo and Tymlos are not good choices after Prolia. So what's left? If you cannot take bisphosphonates, then Evenity is the only one left. (That may have been one small study, so ask your doctor...the link is on this thread https://connect.mayoclinic.org/discussion/high-anxiety-regarding-reclast-or-prolia-decison-for-op-meds/?pg=2#comment-1126992)

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The doctor I have is very pessimistic that I have any effective options since I can’t take a drug in the fossamax/alendronate type and I can’t afford Prolia. The best I could do is stop Prolia after the first time so there is a smaller loss. As I understand it, it woukd be far worse to stop Prolia if I’d taken it 3-4 times over - few years. I’m collecting options here so I have notes to ask the doctor about. Right now he requested extensive bloodwork before he makes a recommendation.

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@cobalt

The doctor I have is very pessimistic that I have any effective options since I can’t take a drug in the fossamax/alendronate type and I can’t afford Prolia. The best I could do is stop Prolia after the first time so there is a smaller loss. As I understand it, it woukd be far worse to stop Prolia if I’d taken it 3-4 times over - few years. I’m collecting options here so I have notes to ask the doctor about. Right now he requested extensive bloodwork before he makes a recommendation.

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Would you be able to do Reclast at a lower dose? Or Evenity for a few months?

I do have a friend who stopped Prolia and so far is okay, but her DEXA's weren't bad to begin with. Her doctor tried to put her on Tymlos after Prolia arghhhhh!

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@windyshores

@gently I saw that after I posted! I am seriously wondering if I should stop at 1mg Reclast and go back to an anabolic for awhile. The protocol seems to lag way behind the research.

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windyshores, the research hasn't been done. This study is so small, still @255anny has sent us a gem. You are way ahead of the game. Honestly, you, out of the blue, just take the perfect amount of romosoxumab. Way too clever.
Romosoxumab worries me in that it really isn't remodeling, but placing new bone where it does while our bones are still developing.
I'm happy and surprised that you would consider Forteo again.
We experiment on ourselves.

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@gently

windyshores, the research hasn't been done. This study is so small, still @255anny has sent us a gem. You are way ahead of the game. Honestly, you, out of the blue, just take the perfect amount of romosoxumab. Way too clever.
Romosoxumab worries me in that it really isn't remodeling, but placing new bone where it does while our bones are still developing.
I'm happy and surprised that you would consider Forteo again.
We experiment on ourselves.

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@gently, are you trying to lure windy to take forteo again? 🤔

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