The Doctors Reply after Prolia AFF and now recommends Forteo

Posted by sbax75 @sbax75, Oct 23 3:57pm

Your thoughts are appreciated: On Prolia six years: Three weeks ago I had a A-typical fracture. After the fracture, I suggested Reclast to my endocrinologist, after she wanted me to go on Tymlos. Insurance denied that and now she wants me on Forteo. This is what she replied to my question:
" "The reason why I didn't want to go with Reclast is that it is a bisphosphonate, which carries the highest risk of atypical femur fractures. Ongoing exposure to bisphosphonates only put you at higher risk of fracture of your other femur.
Yes, typically reclast/bisphosphonates are recommended after Prolia, but not in cases of atypical femur fracture unless both femurs were surgically operated on and fixed." " Does what this Doctor writes above make sense?
Please share your insights into next steps.

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So sorry about your fracture, Is it being surgically fixed? Did you fracture one or both? I hope you are not in too much pain.

According to the book "Great Bones" by McCormick, which is often cited here, and various videos (see Ben Leder on YouTube) and my doctors, Forteo and Tymlos are not very effective after Prolia and are not good choices to deal with the rebound when Prolia stops. The rebound not only lowers bone density but increases fracture risk- according to my doc and those sources.

My understanding has been that Reclast is the best option after 6 years of Prolia but you are in an unusual situation. Someone on this forum posted a study that showed that Evenity could work to combat rebound and might even have some effectiveness, though reduced due to prior use of Prolia.

Your doctor may have newer info on Forteo after Prolia- but so far I have only seen the info that it isn't a good choice after Prolia. Durng Prolia the osteoclasts that break bone down go into hibernation, so to speak, and come rushing back. Forteo does not lower that osteoclast action but Evenity does (and Reclast does even more strongly).

Tymlos has the reputation of being good for healing. I don't know if Evenity is....ask your doctor about that! It seems as if, in the bind that you are in, Evenity might be a good choice but you will still have to do Reclast afterwards according to current protocols. So either Evenity or Reclast. I would ask your endo and maybe get a second opinion if need be. This is a tough spot to be in (we are all in tough spots but this is very tough).

REPLY

@sbax75 Your difficulty brings up a problem I hadn't considered. How to deal with the difficulties of dealing with the dangers of stopping Prolia and the damage (atypical femur fractures) caused by mainly antiresorptive osteo meds at the same time. What I'm going to say below is rather speculative and I have not been in your shoes. That said, I'll speculate.

You cannot just stop Prolia without losing a lot of bone, that's for sure. And some people don't just lose a lot of bone but they have multiple fractures.
So,
On the one hand the safest known way to get off of Prolia is with Reclast.
But on the other hand if you have already been on Prolia 6 years and have had an AFF then you need to get some remodeling going in your bones. Some modest clean up and some bone building both. But not out of control cleanup like can happen with the stoppage of Prolia.

As @windyshores has just commented Forteo and Tymlos are not considered safe follow ups to Prolia. Too much bone clean up may happen and at least initially you may lose bone using either of those. That basically leaves Evenity which can hopefully get your bone building and remodeling going without the clean up side being too activated. After Evenity gives you a period of remodeling you could hopefully safely try Reclast or another bisphosphonate to preserve bone. Perhaps alternating bone builders and bisphosphonates down the road to get periods of bone building and remodeling and periods of mainly preserving the bone you have but not having such long periods of suppressed remodeling as six years of Prolia gives you.

There's one study where Evenity was given both before and after Prolia in one arm of the study. It appeared to work fine with no new safety concerns on the year of Evenity following Prolia. Those following Prolia with Evenity were able to gain more in the spine and break even in the hips. Not the same benefits as giving Evenity as the first osteoporosis med though still benefit.

But this study does not directly apply to your situation. The length of time on Prolia before the second Evenity round was only one year. Very different than six years. This is an important study with a wealth of information but one year of Prolia is just very different than six years. Perhaps there are other studies that cover a longer time period on Prolia or at least doctors who have used Evenity after years of Prolia successfully. If you have the time it could be very useful to get more information on Evenity after long term Prolia use.
Here's the paper I mentioned above: https://link.springer.com/article/10.1007/s00198-019-05146-9
I wish you the best of luck

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@awfultruth

@sbax75 Your difficulty brings up a problem I hadn't considered. How to deal with the difficulties of dealing with the dangers of stopping Prolia and the damage (atypical femur fractures) caused by mainly antiresorptive osteo meds at the same time. What I'm going to say below is rather speculative and I have not been in your shoes. That said, I'll speculate.

You cannot just stop Prolia without losing a lot of bone, that's for sure. And some people don't just lose a lot of bone but they have multiple fractures.
So,
On the one hand the safest known way to get off of Prolia is with Reclast.
But on the other hand if you have already been on Prolia 6 years and have had an AFF then you need to get some remodeling going in your bones. Some modest clean up and some bone building both. But not out of control cleanup like can happen with the stoppage of Prolia.

As @windyshores has just commented Forteo and Tymlos are not considered safe follow ups to Prolia. Too much bone clean up may happen and at least initially you may lose bone using either of those. That basically leaves Evenity which can hopefully get your bone building and remodeling going without the clean up side being too activated. After Evenity gives you a period of remodeling you could hopefully safely try Reclast or another bisphosphonate to preserve bone. Perhaps alternating bone builders and bisphosphonates down the road to get periods of bone building and remodeling and periods of mainly preserving the bone you have but not having such long periods of suppressed remodeling as six years of Prolia gives you.

There's one study where Evenity was given both before and after Prolia in one arm of the study. It appeared to work fine with no new safety concerns on the year of Evenity following Prolia. Those following Prolia with Evenity were able to gain more in the spine and break even in the hips. Not the same benefits as giving Evenity as the first osteoporosis med though still benefit.

But this study does not directly apply to your situation. The length of time on Prolia before the second Evenity round was only one year. Very different than six years. This is an important study with a wealth of information but one year of Prolia is just very different than six years. Perhaps there are other studies that cover a longer time period on Prolia or at least doctors who have used Evenity after years of Prolia successfully. If you have the time it could be very useful to get more information on Evenity after long term Prolia use.
Here's the paper I mentioned above: https://link.springer.com/article/10.1007/s00198-019-05146-9
I wish you the best of luck

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@awfultruth whoooaaa I am glad you pointed out that that study followed only one year of Prolia! That makes me wonder if the only safe course is Reclast for @sbax75. I wonder what info is available on Reclast's antideportation following 6 years of Prolia with an atypical femur fracture. Hoping the doctor knows the best path.

REPLY

@sbax75 this may be obvious but Prolia poses the risk of fractures in two ways. The first is your experience AFF fairly rare. It happens because Prolia form weaker, avascular bone. It stops the normal process of bone remodeling. Your doctor is right in thinking that you have risk in the unfractured femur.

Fractures from the second risk happen when you stop taking Prolia. The way that Prolia prevents this process of rebuilding is peculiar to Prolia. It stops the osteoclasts-- the acid emitting cells that break the bones down. It stops them in the last stage of development. And they collect. You have six times as many preosteoclasts as you would without having taken Prolia. But they are held in abeyance until you stop the drug.
Fractures from the second risk are common, rare not to have in multiples mainly in the spinal vertebrae. In my thinking these osteoblasts are your greatest risk over the next 3 to 6 months. Bisphosphonates are the drug that best destroys them. Evenity halts the osteoblasts at an earlier stage of development and so cannot prevent the onlslaught of those preosteoblasts from Prolia use. I wouldn't want Reclast because of it's long term effect on your bones. I would take an oral bisphosphonate or IV Boniva starting right away with the intent to take Tymlos or Forteo as soon as possible. The effect of either of the anabolics will be blunted or slowed down, but still will have some protective effect that will overtake the blunting bisphosphonate.
You might want to request bone markers. The broken bone will confound the results, but will give you the progress of the osteoblasts and osteoclasts, allowing you to adjust bisphosphonate dosage. When the osteoclasts subside, I would stop the bisphosphonate.
Your doctor makes sense. She is aware of the accrued effect of bisphosphonate after Prolia on AFF for the un fractured leg.
I do wish she had challenged the insurance denial. You might ask her to get a courtesy Tymlos pen from the drug rep. because I don't think you should wait, even without knowing how long it has been since your last Prolia.
Connect is at it's best when we challenge each other's thinking. Anyone reading this should question it most helpfully in a post.
@abax75, I hope your fracture is healing well. I think that you can get out from under this temporary danger without further pain.

When was your last Prolia shot. At six months you

REPLY
@gently

@sbax75 this may be obvious but Prolia poses the risk of fractures in two ways. The first is your experience AFF fairly rare. It happens because Prolia form weaker, avascular bone. It stops the normal process of bone remodeling. Your doctor is right in thinking that you have risk in the unfractured femur.

Fractures from the second risk happen when you stop taking Prolia. The way that Prolia prevents this process of rebuilding is peculiar to Prolia. It stops the osteoclasts-- the acid emitting cells that break the bones down. It stops them in the last stage of development. And they collect. You have six times as many preosteoclasts as you would without having taken Prolia. But they are held in abeyance until you stop the drug.
Fractures from the second risk are common, rare not to have in multiples mainly in the spinal vertebrae. In my thinking these osteoblasts are your greatest risk over the next 3 to 6 months. Bisphosphonates are the drug that best destroys them. Evenity halts the osteoblasts at an earlier stage of development and so cannot prevent the onlslaught of those preosteoblasts from Prolia use. I wouldn't want Reclast because of it's long term effect on your bones. I would take an oral bisphosphonate or IV Boniva starting right away with the intent to take Tymlos or Forteo as soon as possible. The effect of either of the anabolics will be blunted or slowed down, but still will have some protective effect that will overtake the blunting bisphosphonate.
You might want to request bone markers. The broken bone will confound the results, but will give you the progress of the osteoblasts and osteoclasts, allowing you to adjust bisphosphonate dosage. When the osteoclasts subside, I would stop the bisphosphonate.
Your doctor makes sense. She is aware of the accrued effect of bisphosphonate after Prolia on AFF for the un fractured leg.
I do wish she had challenged the insurance denial. You might ask her to get a courtesy Tymlos pen from the drug rep. because I don't think you should wait, even without knowing how long it has been since your last Prolia.
Connect is at it's best when we challenge each other's thinking. Anyone reading this should question it most helpfully in a post.
@abax75, I hope your fracture is healing well. I think that you can get out from under this temporary danger without further pain.

When was your last Prolia shot. At six months you

Jump to this post

@sbax75 After 6 years on Prolia, I wonder if Reclast is the only way to deal with rebound. What a bind to be in.

@gently interesting fact on Evenity suppressing osteoclasts at an earlier stage of development.

If had been one year of Prolia, you could discuss Evenity with your MD because there is some study on that.

It seems bisphosphonate then either Evenity or Tymlos / Forteo but then more bisphosphonate will be needed. Prolia won't be an option.

The fact remains that Tymlos and Forteo are not effective after Prolia (especially after 6 years ?), and fractures may result. Evenity is uncertain after longer term use of Prolia, as @gently described. So the questions are 1) Is an oral bisphosphonate strong enough to combat rebound and 2) what cumulative effect does repeated bisphosphonate use have an atypical fracture risk? and 3) What other choices do you have? (Maybe ask about how Raloxifene might fit in this whole scenario?)

ps I hope you can have a DEXA on the unfractured side!

REPLY

@sbax75, You have two pressing issues needing to be addressed at the same time and this presents a huge dilemma: the cessation of prolia after 6-year treatment calls for a strong bisphosphonate such as Reclast to curtail the rebound effect and the possibility of vcf occurrence(s), while AFF calls for an anabolic such as Forteo or Tymlos for proper bone healing. Either treatment alone does not address the other issue while a bisphosphonate might worsen AFF. Prioritization of the issues will determine the selection of treatment modality.

Interestingly, clinical studies had been done for the combination therapy of Reclast + Forteo (or fosamax + Forteo):

Cosman F, Eriksen EF, Recknor C, et al. Effects of intravenous zoledronic acid plus subcutaneous teriparatide [rhPTH(1-34)] in postmenopausal osteoporosis. J Bone Miner Res 2011;26:503-11

What’s the implication of such combination therapy in a situation like yours?

For the eventual treatment with Forteo/Tymlos for AFF, the addition of estrogen or raloxifene could be considered. Either one appeared to enhance Forteo’s anabolic effect in clinical studies, although risks vs rewards for the addition of estrogen or raloxifene need to be carefully sorted out.

Wish you best of luck.

REPLY
@gently

@sbax75 this may be obvious but Prolia poses the risk of fractures in two ways. The first is your experience AFF fairly rare. It happens because Prolia form weaker, avascular bone. It stops the normal process of bone remodeling. Your doctor is right in thinking that you have risk in the unfractured femur.

Fractures from the second risk happen when you stop taking Prolia. The way that Prolia prevents this process of rebuilding is peculiar to Prolia. It stops the osteoclasts-- the acid emitting cells that break the bones down. It stops them in the last stage of development. And they collect. You have six times as many preosteoclasts as you would without having taken Prolia. But they are held in abeyance until you stop the drug.
Fractures from the second risk are common, rare not to have in multiples mainly in the spinal vertebrae. In my thinking these osteoblasts are your greatest risk over the next 3 to 6 months. Bisphosphonates are the drug that best destroys them. Evenity halts the osteoblasts at an earlier stage of development and so cannot prevent the onlslaught of those preosteoblasts from Prolia use. I wouldn't want Reclast because of it's long term effect on your bones. I would take an oral bisphosphonate or IV Boniva starting right away with the intent to take Tymlos or Forteo as soon as possible. The effect of either of the anabolics will be blunted or slowed down, but still will have some protective effect that will overtake the blunting bisphosphonate.
You might want to request bone markers. The broken bone will confound the results, but will give you the progress of the osteoblasts and osteoclasts, allowing you to adjust bisphosphonate dosage. When the osteoclasts subside, I would stop the bisphosphonate.
Your doctor makes sense. She is aware of the accrued effect of bisphosphonate after Prolia on AFF for the un fractured leg.
I do wish she had challenged the insurance denial. You might ask her to get a courtesy Tymlos pen from the drug rep. because I don't think you should wait, even without knowing how long it has been since your last Prolia.
Connect is at it's best when we challenge each other's thinking. Anyone reading this should question it most helpfully in a post.
@abax75, I hope your fracture is healing well. I think that you can get out from under this temporary danger without further pain.

When was your last Prolia shot. At six months you

Jump to this post

Started 6 month Prolia in September 2022. Seems scary with all the information on Prolia here. I have a stage 3 prostate cancer that I cannot remove. I have been on Orgovyx since May 2022. Very successful with it. I will talk to my cancer doctor about the Prolia at my next 3 month checkup.

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@jksenakjr
many use Prolia without experiencing the side effects described.
When Prolia was approved the mechanism of action was not completely understood. It took a lot of fracturing in order to understand that a patient cannot just quit Prolia. This medication can usually be prescribed safely. It is just necessary when you stop the medication to take another medication almost always Reclast. Clinical trials have shown that Prolia is more effective at both preventing the spread to the bone from prosate cancer and of slowing existing metastasis.
Bisphosphonates are often prescribed with prostate cancer because they help prevent bone marrow metastasis. With the loss of testosterone you incur the loss of bone, so it was wise of your doctor to remedy that losss with medication. If you already had bone loss, your doctor may have also wanted to build your bone more quickly so as to prevent fracture.
I'm sorry about your stage three. Orgovyx is the best of the ADTs. With all the new research there may emerge a way for you to remove that cancer. Best wishes

REPLY
@gently

@sbax75 this may be obvious but Prolia poses the risk of fractures in two ways. The first is your experience AFF fairly rare. It happens because Prolia form weaker, avascular bone. It stops the normal process of bone remodeling. Your doctor is right in thinking that you have risk in the unfractured femur.

Fractures from the second risk happen when you stop taking Prolia. The way that Prolia prevents this process of rebuilding is peculiar to Prolia. It stops the osteoclasts-- the acid emitting cells that break the bones down. It stops them in the last stage of development. And they collect. You have six times as many preosteoclasts as you would without having taken Prolia. But they are held in abeyance until you stop the drug.
Fractures from the second risk are common, rare not to have in multiples mainly in the spinal vertebrae. In my thinking these osteoblasts are your greatest risk over the next 3 to 6 months. Bisphosphonates are the drug that best destroys them. Evenity halts the osteoblasts at an earlier stage of development and so cannot prevent the onlslaught of those preosteoblasts from Prolia use. I wouldn't want Reclast because of it's long term effect on your bones. I would take an oral bisphosphonate or IV Boniva starting right away with the intent to take Tymlos or Forteo as soon as possible. The effect of either of the anabolics will be blunted or slowed down, but still will have some protective effect that will overtake the blunting bisphosphonate.
You might want to request bone markers. The broken bone will confound the results, but will give you the progress of the osteoblasts and osteoclasts, allowing you to adjust bisphosphonate dosage. When the osteoclasts subside, I would stop the bisphosphonate.
Your doctor makes sense. She is aware of the accrued effect of bisphosphonate after Prolia on AFF for the un fractured leg.
I do wish she had challenged the insurance denial. You might ask her to get a courtesy Tymlos pen from the drug rep. because I don't think you should wait, even without knowing how long it has been since your last Prolia.
Connect is at it's best when we challenge each other's thinking. Anyone reading this should question it most helpfully in a post.
@abax75, I hope your fracture is healing well. I think that you can get out from under this temporary danger without further pain.

When was your last Prolia shot. At six months you

Jump to this post

Thank you so much for your thoughtful reply. The end of your reply didn't post-it just read's "at six months"
But to answer your question:
My last shot was due a week after the fracture. I am now three week from when the last Prolia shot should have been given. Oral bisphosphonate were not tolerated, years ago. You write: "I would take an oral bisphosphonate or IV Boniva starting right away with the intent to take Tymlos or Forteo as soon as possible."
Do mean to do this as a combination therapy? Or just start Forteo as soon as possible?

REPLY
@gently

@jksenakjr
many use Prolia without experiencing the side effects described.
When Prolia was approved the mechanism of action was not completely understood. It took a lot of fracturing in order to understand that a patient cannot just quit Prolia. This medication can usually be prescribed safely. It is just necessary when you stop the medication to take another medication almost always Reclast. Clinical trials have shown that Prolia is more effective at both preventing the spread to the bone from prosate cancer and of slowing existing metastasis.
Bisphosphonates are often prescribed with prostate cancer because they help prevent bone marrow metastasis. With the loss of testosterone you incur the loss of bone, so it was wise of your doctor to remedy that losss with medication. If you already had bone loss, your doctor may have also wanted to build your bone more quickly so as to prevent fracture.
I'm sorry about your stage three. Orgovyx is the best of the ADTs. With all the new research there may emerge a way for you to remove that cancer. Best wishes

Jump to this post

Thank you for your reply. I appreciate hearing from you.

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