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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@windyshores

@25anny how long you would take Reclast after Evenity depends on your DEXA and your bone markers. My docs expect me to do it for three years but I doubt I will. The limit is 5 years, not sure if that is for a lifetime or one course. Most people are able to take a drug holiday. Some docs do it every 2 years.

There is no data, according to my doctors, on Evenity after Forteo or Tymlos, let alone on the other way around. I was originally told, I think in a masterclass on osteoporosis, that you could do Tymlos or Forteo first but not Evenity, possibly because Evenity "turbocharges" growth (I remember that word being used) so there is less for the other meds to do. But Evenity came out in 2019, that was early 2021, so I don't know what has come out since. My doctors are very "evidence-based" and are waiting for studies so Reclast is all they discuss right now. I am going to bring up doing more anabolics.

I don't think there are any definite answers right now. It's helpful that we all research (and share it) but in practice the choice right now are limited: seems to be Prolia or Reclast after Evenity and if Prolia is done, many people are doing one year and then doing Reclast. Even that latter strategy is relatively new, at least for me. I am doing lower dose Reclast more often so am in your same position of wondering what to do next.

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My doctor is putting me on Alendronate after Evenity. It is similar to reclast, but not so much at once. I take a pill once a week in the morning before eating----you must wait 30 min. and sit or stand during that time before eating. I have no problems with it.

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@mayblin

From one evenity study I read, on average, bmd increased a little over 4% during 0-3mo, closer to 4% during 4-6mo, then roughly 3-4% during months 7-12. If therapy continues, the second year had another few percentage increase in bmd so not very effective. Like you noted, efficacy in bone building is greatest during first few months.

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@mayblin I made myself crazy wondering if I should stop Evenity after 3 months or 4 month or 6 months and so on as the bone building supposedly decreases. I did not stop, I've had 10 so far. I think the question is does it decrease so much that there's no point in continuing to take it. I even saw in another forum that a nurse had advised someone to stop as there was no point in continuing.
I think we have all gotten confused over this. Assuming your numbers are correct (and I saw that study to) the rate of increase in bone density after 6 months is about a half of what it was in the first six months. But it's still a nice gain in months 7-12. 3-4% for 6 months means that the yearly rate would be 6-8% which is getting close to Forteo treatment yearly increases isn't it? Nothing to sneeze at or dismiss because of the statement that most bone building occurs in the first several months.

Maybe it's the P1NP that spikes quickly and then returns to normal that has everyone thinking it can't be building bone because the P1NP is no longer elevated. Maybe that means that it's functioning as an anti-resorptive and not building new bone but maybe we just don't understand it well enough. Maybe after that P1NP spike it keeps building bone despite the P1NP dropping back down quickly. Seems to me the important point is that the increase in bone density continues quite nicely. I go with the DXA scores on this one. The 13% gains they got for one year in two large studies and the reduced fracture rates. I'm getting a DXA this coming week. Fingers crossed.

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@windyshores

@25anny how long you would take Reclast after Evenity depends on your DEXA and your bone markers. My docs expect me to do it for three years but I doubt I will. The limit is 5 years, not sure if that is for a lifetime or one course. Most people are able to take a drug holiday. Some docs do it every 2 years.

There is no data, according to my doctors, on Evenity after Forteo or Tymlos, let alone on the other way around. I was originally told, I think in a masterclass on osteoporosis, that you could do Tymlos or Forteo first but not Evenity, possibly because Evenity "turbocharges" growth (I remember that word being used) so there is less for the other meds to do. But Evenity came out in 2019, that was early 2021, so I don't know what has come out since. My doctors are very "evidence-based" and are waiting for studies so Reclast is all they discuss right now. I am going to bring up doing more anabolics.

I don't think there are any definite answers right now. It's helpful that we all research (and share it) but in practice the choice right now are limited: seems to be Prolia or Reclast after Evenity and if Prolia is done, many people are doing one year and then doing Reclast. Even that latter strategy is relatively new, at least for me. I am doing lower dose Reclast more often so am in your same position of wondering what to do next.

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@windyshores I really don't get the strategy of doing Prolia for one year following an anabolic and then doing Reclast. There is some modest advantage in increasing bone density with those 2 Prolia shots over the Reclast shot but to go for a modest bump in density when doing so opens up the possibility of rapid bone loss and multiple fracturing. Seems like a lot of risk and worry (at least if you know what you are doing you would know there is a risk). for again a modest potential gain in density. Both Prolia and Reclast give you an increase in density but with different risk "profiles". Sorry I'm not providing numbers here but I would have to spend too much time searching for that info. I'm in the camp of "No on Prolia" unless I'm convinced I'm in my last years of life and won't have to stop taking it.

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@awfultruth

@windyshores I really don't get the strategy of doing Prolia for one year following an anabolic and then doing Reclast. There is some modest advantage in increasing bone density with those 2 Prolia shots over the Reclast shot but to go for a modest bump in density when doing so opens up the possibility of rapid bone loss and multiple fracturing. Seems like a lot of risk and worry (at least if you know what you are doing you would know there is a risk). for again a modest potential gain in density. Both Prolia and Reclast give you an increase in density but with different risk "profiles". Sorry I'm not providing numbers here but I would have to spend too much time searching for that info. I'm in the camp of "No on Prolia" unless I'm convinced I'm in my last years of life and won't have to stop taking it.

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It's so confusing!
At this point in my decision journey, my research points in these directions. But surely, there are other options and sequencing protocols. But maybe not.

1) Evenity>>Prolia 1 yr. >>Reclast
2) Evenity>>Prolia 1 yr. >>Evenity. Dr's prescribed sequence
3) Evenity >>Reclast
Each option has pros and cons. I'd like to avoid the Prolia and the rebound effect after stopping, even after 1 year. I'm not convinced the dual actions of Evenity has enough ummp (!) to blunt the rebounding of Prolia. I understand the proposed jump in BMD we should get from the Prolia, but not everyone responds with great gains. So why take it?
Realizing my spine is _4.7, after Evenity, is Reclast not what I need?
Reclast adverse side effect bother me. Just how bad is it!

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@255anny

It's so confusing!
At this point in my decision journey, my research points in these directions. But surely, there are other options and sequencing protocols. But maybe not.

1) Evenity>>Prolia 1 yr. >>Reclast
2) Evenity>>Prolia 1 yr. >>Evenity. Dr's prescribed sequence
3) Evenity >>Reclast
Each option has pros and cons. I'd like to avoid the Prolia and the rebound effect after stopping, even after 1 year. I'm not convinced the dual actions of Evenity has enough ummp (!) to blunt the rebounding of Prolia. I understand the proposed jump in BMD we should get from the Prolia, but not everyone responds with great gains. So why take it?
Realizing my spine is _4.7, after Evenity, is Reclast not what I need?
Reclast adverse side effect bother me. Just how bad is it!

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@255anny I think you are doing great with your reasoning. As you know the problem is there are not enough studies asking the right questions for our reasoning to be foolproof. I'm agonizing over a similar situation myself.
My suggestion would be Evenity - Reclast - Evenity - Reclast. Basing your use of Reclast on bone markers (and DXA results), not on the "just doing a yearly dose method". As I said previously I see inserting Prolia into the mix bringing in a lot of uncertainty and worry for only a slightly increased bone gain.
There are certainly real risks with Reclast too but multiple fracturing is not one of them. I would consider the lower dose route with Reclast which would theoretically reduce the risk and impact of Reclast side effects. I'm probably going to be discussing (arguing?) about this with my doctor this week.
See my post on studies showing lower dosing with Reclast works well:
https://connect.mayoclinic.org/discussion/reclast-iv-half-dosage/?pg=2#comment-1127778

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@gently

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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@gently you presented a thought provoking path! Good studies for either pth analog to evenity or evenity to pth analog are almost non-existent. The serial anabolic exposure from pth analog to evenity to pth analog calls for a veteran bone specialist's attention. A bold yet innovative idea to say the least. Are there any conceptual bases to back it up? Or, do you see a clear advantage in the absence of an antiresorptive (either reclast or prolia in this case), given anny's need for a quick boost in bmd (hence a reduction of her very high frax score) in a short periods of time?

Curiously, do you think toggling between tymlos and forteo could enhance anabolic effects given their differences in receptor binding?

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@awfultruth

@mayblin I made myself crazy wondering if I should stop Evenity after 3 months or 4 month or 6 months and so on as the bone building supposedly decreases. I did not stop, I've had 10 so far. I think the question is does it decrease so much that there's no point in continuing to take it. I even saw in another forum that a nurse had advised someone to stop as there was no point in continuing.
I think we have all gotten confused over this. Assuming your numbers are correct (and I saw that study to) the rate of increase in bone density after 6 months is about a half of what it was in the first six months. But it's still a nice gain in months 7-12. 3-4% for 6 months means that the yearly rate would be 6-8% which is getting close to Forteo treatment yearly increases isn't it? Nothing to sneeze at or dismiss because of the statement that most bone building occurs in the first several months.

Maybe it's the P1NP that spikes quickly and then returns to normal that has everyone thinking it can't be building bone because the P1NP is no longer elevated. Maybe that means that it's functioning as an anti-resorptive and not building new bone but maybe we just don't understand it well enough. Maybe after that P1NP spike it keeps building bone despite the P1NP dropping back down quickly. Seems to me the important point is that the increase in bone density continues quite nicely. I go with the DXA scores on this one. The 13% gains they got for one year in two large studies and the reduced fracture rates. I'm getting a DXA this coming week. Fingers crossed.

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@awfultruth i think you made a good call. I will do the same if i need a big bmd boost to reduce frax risk. Trial results clearly showed there are further bmd increase during 7-12 months of evenity treatment, by a good margin. The numbers in bmd increase vary depending on which paper you are reading, but generally greater than 3% - a margin many studies deem as "significant". Unless, you have a way to relay to an antiresorptive then back to evenity and show more advantage over a straight 12mo treatment. So far no studies showed that yet.

Did you have your bone markers monitored during evenity treatment?

We had a discussion a few days ago re if it's oversimplified to say first few months are anabolic (btms are saying otherwise) and last half (maybe?) is antiresorptive during 12mo evenity treatment.

I will try to attach the actual graph of bmd changes for 24mo evenity later. The link was in an earlier reply.

Could you keep us posted re your dexa results at the completion of evenity? Thanks!

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@awfultruth

@mayblin I made myself crazy wondering if I should stop Evenity after 3 months or 4 month or 6 months and so on as the bone building supposedly decreases. I did not stop, I've had 10 so far. I think the question is does it decrease so much that there's no point in continuing to take it. I even saw in another forum that a nurse had advised someone to stop as there was no point in continuing.
I think we have all gotten confused over this. Assuming your numbers are correct (and I saw that study to) the rate of increase in bone density after 6 months is about a half of what it was in the first six months. But it's still a nice gain in months 7-12. 3-4% for 6 months means that the yearly rate would be 6-8% which is getting close to Forteo treatment yearly increases isn't it? Nothing to sneeze at or dismiss because of the statement that most bone building occurs in the first several months.

Maybe it's the P1NP that spikes quickly and then returns to normal that has everyone thinking it can't be building bone because the P1NP is no longer elevated. Maybe that means that it's functioning as an anti-resorptive and not building new bone but maybe we just don't understand it well enough. Maybe after that P1NP spike it keeps building bone despite the P1NP dropping back down quickly. Seems to me the important point is that the increase in bone density continues quite nicely. I go with the DXA scores on this one. The 13% gains they got for one year in two large studies and the reduced fracture rates. I'm getting a DXA this coming week. Fingers crossed.

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There is a limit to the creativity we can pursue in light of lack of studies. Some of our agonizing amounts to dancing on the head of a pin!

@awfultruth and @255anny my doctor says they do not really know why Evenity continues to work. It takes awhile for it to mineralize bone. The anti-resorptive bone markers aren't that low. But it does continue to work.
(Studies are being done on whether the results are the same with Reclast after month 6 instead of the second half of Evenity.) I stopped because of some neuro side effects and I had already gotten a 20% gain in spine with Tymlos so I didn't feel I needed the rest of Evenity. But if I hadn't had side effects I would have continued.

Reclast stays in the body a lot longer than Prolia. This may be both good and bad! Dr. Ben Leder's video is quite positive about Prolia's boost of bone density (You Tube) except for rebound, and McCormick has been cited as saying one year might be safe. Someone posted a study on another thread that not only did Evenity after Prolia hold things steady but there was a small gain, though smaller than if Evenity had been the first drug.

I am most concerned with the muting of effectiveness of anabolics with anti-resorptive use. So far, we need Reclast at some point no matter what we do (or Fosamax in some cases). What does that mean in the long run?

@255anny for a score that is still very low, and not much impact from Forteo, you are in a tough place. I would talk with your doctor who sounds smart.

I am vowing to do a little less speculation and try to trust my doctor, who is well informed and flexible in accommodating my vulnerabilities. Since everyone here is thinking so much about what to do, do you have doctors who will do what you decide?

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In reply to @mayblin "@awfultruth" + (show)

@mayblin Those charts are so confusing to me - I don't understand the legend or the transitions to the second year.
I can follow the first year of Evenity though. After 6 months both lumbar spine and total hip density improvement is slightly less than half of the improvement for the first 6 months. But still, as I say that additional improvement is worthwhile.
The one thing I see that I'd never paid attention to before is that the CTX marker goes down quite a bit and immediately. So perhaps it's functioning as an anti-resorptive strongly also in those first 6 months. Maybe it's not simply anabolic 6 months, anti-resorptive the next 6 months. Maybe it's a more complicated picture starting at the very beginning.
Not sure that what I'm saying here makes any difference except that perhaps it supports continuing to do Evenity past the first few months of greatest increase.

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