1. < Osteoporosis & Bone Health

Support For Those Quitting Prolia

Posted by formisc @formisc, Feb 13 10:14pm

I wanted to start this Discussion as a support thread for those who have already decided to quit Prolia and are in the process of transitioning out of Prolia to share our knowledge, thoughts, decisions and experiences as i had difficulty finding such posts from the various other Prolia threads. Those who have already completed their transition from Prolia are most welcome to contribute their experience.

It would help if you could include some basic info such as TScores, BTMs if available, number of Prolia injections taken, what med you transitioned to, length of time on relay drug and any feedback on effectiveness/reaction to the relay drug.

To prevent overlap with other Discussions already on this forum, the reasons for quitting Prolia need not be raised and it will be assumed that you have already done your research and made your decision. It is hoped that this Discussion will focus more on any feedback/advice that can assist in the transitioning process i.e. not on the 'Why' (quit Prolia) but more on the 'How' (to manage the transition).

Maybe i can start.

Background:
My TScores from my 1st DXA scan in May 2022 were:
Lumbar Spine -1.3
Femoral Neck -2.7
Total Hip -3.0
Unfortunately, my PCP did not order any BTMs so i do not have any baseline numbers.

My 1st Prolia shot was in July 2022, 2nd in Jan 2023 and my 3rd in July 2023.

In Dec 2023 after 18 months on Prolia, i did my 2nd DXA and the results were:
Lumbar Spine -1.1
Femoral Neck -2.6

I decided to quit Prolia before the 4th shot and started on weekly Alendronate in Jan 2024. To date, i have taken 7 Alendronate tablets.

Feedback on Alendronate:
The relay drugs most often cited are Reclast (most frequent) and Alendronate. Alendronate is not recommended for those with esophagus issues as it can irritate and damage the digestive tract.

I decided on Alendronate instead of Reclast as i was wary of taking in a full 1 year's dose of meds in one go and also because i read that the timing of the Reclast infusion can be tricky and the wrong timing may necessitate additional infusions. With Alendronate being a smaller weekly dose, the timing is not really an issue provided there is no delay in starting it at the time the Prolia shot is due.

The 2 days after the first Alendronate tablet and also after the 3rd tablet, i had a bit of stomach pain which went away after i took Veragel. From the 4th week to the 7th week, i have had an achy feeling at the side of my left knee. More surprisingly, i had 3 episodes of tinnitus after my 6th tablet, something which i have not experienced for a long time.

All the above side-effects have been bearable so i will continue with the Alendronate. I pray for the side-effects to cease as i do not want to go on Reclast and i read that Actonel is not potent enough to mitigate the rebound effect.

I plan to do a BTM test in Mar 2024 and quarterly thereafter for the 1st year and a DXA at the end of the 1st year. Depending on the results, i may stop the Alendronate or perhaps go on half-dosage for another 6 months instead of stopping cold turkey. Will also do a BTM at 18 months and a BTM cum DXA at 24 months of Alendronate as the rebound window supposedly stretches over 30 months from the last Prolia shot.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Michael Lavacot | @michaellavacot | Feb 28 10:41am
In reply to @formisc "Hi Michael, I must commend you on a very well-done presentation and a professional looking video!..." + (show)
@formisc

Hi Michael,
I must commend you on a very well-done presentation and a professional looking video! I really thought you were a doctor until i read your post above!

I found the section on stopping Prolia very helpful and encouraging. I was less thrilled on the part promoting the use of Prolia under different circumstances.

I didn't want to discuss the pros and cons of Prolia in this discussion thread which, as i stated earlier in my first post, was to cater for those who already decided to quit Prolia but feel i should at least say something to act as a balance to the "positives" mentioned in the presentation.

To me Prolia is like a never-ending tunnel. Once you start on it, it becomes progressively harder to get off it.

See below video by Cleveland Clinic:


Once on Prolia for 4+ years, there's no guarantee that any drug (including Reclast) will safely allow you to stop without the rebound effect and risk of multiple fractures.

In that case, someone will ask - why stop at all then if the drug works and the side-effects are manageable? To that, i can point out 3 things:

Firstly, there is safety data available for Prolia for only 10 years and most doctors would not advice staying on Prolia for longer than 10 years. So for someone in the 80s or 90s, it could be an option but consider too the next 2 points

Secondly, once on Prolia for around 5 years, there are significant risks of multiple vertebral fractures and osteonecrosis of the jaw and this risk increases the longer one is on Prolia. Prolia reduces bone absorption immensely and this slows down any bone healing after say, any invasive dental work. So staying on Prolia indefinitely brings on increasing risks

Thirdly, circumstances could lead to an unplanned cessation of Prolia, even if temporary, for example, stoppage of insurance coverage upon reaching a target or satisfactory TScore (in fact this was what happened in the past leading to multiple fractures) or as we all experienced, a Covid lockdown. If this sudden unplanned cessation happens after one has more than 1 injection, there will be the risk of rebound effect

As pointed out by some practitioners, there may be cases where Prolia is the best option - the one i have read is where there is a very high risk of impending fracture and a need to very quickly bring down this risk - but i believe these are limited

I have deliberately not bring up the topic of the efficacy of Prolia (and anti-resorptives in general) in improving bones as i did not want to stir up a hornet's nest but there are many who question if anti-resorptives merely add a layer over existing weak bones, hence improving bone density numbers without actually improving their quality

Above are just my views. Like you, i am not a doctor and i am only putting out the above as things that can be brought up and discussed with a PCP/specialist if necessary

Jump to this post

Hi formisc,

Thanks for the complement on the video. I worked for Intel for 20 years and gave a lot of PowerPoint presentations so making it was a lot of fun. And thanks for the response to my post. I think people learn the most from open discussion.

A comment on the Cleveland Clinic video with Dr. Chad Deal. He makes the comment that “so when denosumab is started, I always remind the patient that it’s forever” is absolutely not true and irresponsible based on experts like Dr. John Bilezikian, Dr. Michael McClung (whose study he references), Dr. Serge Ferrari, as well as the studies he references later in his own presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. I show some of these studies in my presentation. And to be clear on some of the other points he makes about fractures after stopping denosumab, those are only prevalent is you do not follow with a bisphosphonate. I show some of that in my presentation with details I did not talk to in the backup.

From the trainings I have attended, antiresorptive risk of ONJ or atypical fractures is well below the risk of a major osteoporotic fracture of not taking them, even long term. I have not heard one doctor argue against this point.

I have no idea on insurance coverage of Prolia but I could see that as an issue. If you stop Prolia too early, you are not left with many options to maintain your bone density for the rest of your life.

Prolia has its place, and in my mind, is almost never the first treatment for osteoporosis. But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range. Prolia is the only option left and I will be on it for 10+ years to get there.

Like you, I’m not a doctor. That said, I’m an engineer looking at a whole bunch of data. And agree, I too am just providing my viewpoint so others can work with their doctor for the best treatment plan for them.

REPLY
2 replies
formisc | @formisc | Feb 28 7:40pm
In reply to @michaellavacot "Hi formisc, Thanks for the complement on the video. I worked for Intel for 20 years..." + (show)
@michaellavacot

Hi formisc,

Thanks for the complement on the video. I worked for Intel for 20 years and gave a lot of PowerPoint presentations so making it was a lot of fun. And thanks for the response to my post. I think people learn the most from open discussion.

A comment on the Cleveland Clinic video with Dr. Chad Deal. He makes the comment that “so when denosumab is started, I always remind the patient that it’s forever” is absolutely not true and irresponsible based on experts like Dr. John Bilezikian, Dr. Michael McClung (whose study he references), Dr. Serge Ferrari, as well as the studies he references later in his own presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. I show some of these studies in my presentation. And to be clear on some of the other points he makes about fractures after stopping denosumab, those are only prevalent is you do not follow with a bisphosphonate. I show some of that in my presentation with details I did not talk to in the backup.

From the trainings I have attended, antiresorptive risk of ONJ or atypical fractures is well below the risk of a major osteoporotic fracture of not taking them, even long term. I have not heard one doctor argue against this point.

I have no idea on insurance coverage of Prolia but I could see that as an issue. If you stop Prolia too early, you are not left with many options to maintain your bone density for the rest of your life.

Prolia has its place, and in my mind, is almost never the first treatment for osteoporosis. But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range. Prolia is the only option left and I will be on it for 10+ years to get there.

Like you, I’m not a doctor. That said, I’m an engineer looking at a whole bunch of data. And agree, I too am just providing my viewpoint so others can work with their doctor for the best treatment plan for them.

Jump to this post

Hi Michael,
Thank you for your quick response.
Much as i disagee with many of your viewpoints, i secretly hope that you are right because, having taken 3 Prolia shots and now transitioning onto Alendronate, i am worried sick about the possibility of MVFs.
Each person will have to decide, based on advice from his/her doctor and more importantly, based on his/her own research on the appropriate treatment for this disease. Personally, i do not want to use a drug that does nothing to stimulate growth of new bone but merely coats over existing old bones especially with all the unique risks that it brings along but i acknowledge that there may be cases where such use may be appropriate.
I have not written off science and i hope that in the near future, we will have effective medicines that can treat this condition safely

REPLY
windyshores | @windyshores | Feb 29 3:30am

@michaellavacot this sentence confused me:

"But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range."

Did you mean Prolia not bisphosphonate?

REPLY
1 reply
rjd | @rjd | Feb 29 7:05am
In reply to @michaellavacot "I am currently taking Prolia and did a huge amount of research on Prolia and the..." + (show)
@michaellavacot

I am currently taking Prolia and did a huge amount of research on Prolia and the other osteoporosis medications. I actually gathered enough information to put together a training on Prolia. The information included is based on a September 2023 presentation by Dr. Serge Ferrari and Dr. Michael McClung at the 9th Central European Congress of Osteoporosis, as well as Dr. John Bilezikian. These are the top doctors in osteoporosis.


I don't get paid for this, I'm just a guy trying to give back to the community that helped me.

Good luck on your journey!

Mike

Jump to this post

How did you determine that the doctors you reference are the 'top doctors in osteroporosis.' There are a lot of players in this particular game including many who call themselves 'doctors' but are not licensed medical practitioners.

REPLY
1 reply
rjd | @rjd | Feb 29 7:11am
In reply to @formisc "Sorry, just a self-correction: "Secondly, once on Prolia for around 5 years, there are significant risks..." + (show)
@formisc

Sorry, just a self-correction:

"Secondly, once on Prolia for around 5 years, there are significant risks of [atypical femur fractures] and osteonecrosis of the jaw... "

Jump to this post

What is a 'significant risk' of fracture or osteonecrosis?" And how does this risk compare to the risk of fracture without treatment? Numbers would be helpful here, if possible.

REPLY
2 replies
rjd | @rjd | Feb 29 7:16am
In reply to @michaellavacot "Hi formisc, Thanks for the complement on the video. I worked for Intel for 20 years..." + (show)
@michaellavacot

Hi formisc,

Thanks for the complement on the video. I worked for Intel for 20 years and gave a lot of PowerPoint presentations so making it was a lot of fun. And thanks for the response to my post. I think people learn the most from open discussion.

A comment on the Cleveland Clinic video with Dr. Chad Deal. He makes the comment that “so when denosumab is started, I always remind the patient that it’s forever” is absolutely not true and irresponsible based on experts like Dr. John Bilezikian, Dr. Michael McClung (whose study he references), Dr. Serge Ferrari, as well as the studies he references later in his own presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. I show some of these studies in my presentation. And to be clear on some of the other points he makes about fractures after stopping denosumab, those are only prevalent is you do not follow with a bisphosphonate. I show some of that in my presentation with details I did not talk to in the backup.

From the trainings I have attended, antiresorptive risk of ONJ or atypical fractures is well below the risk of a major osteoporotic fracture of not taking them, even long term. I have not heard one doctor argue against this point.

I have no idea on insurance coverage of Prolia but I could see that as an issue. If you stop Prolia too early, you are not left with many options to maintain your bone density for the rest of your life.

Prolia has its place, and in my mind, is almost never the first treatment for osteoporosis. But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range. Prolia is the only option left and I will be on it for 10+ years to get there.

Like you, I’m not a doctor. That said, I’m an engineer looking at a whole bunch of data. And agree, I too am just providing my viewpoint so others can work with their doctor for the best treatment plan for them.

Jump to this post

About the 'rebound period.' You say that the studies you reviewed show a rebound period of 1 year. In the original post initiating this thread, the rebound period is referenced as 30 months.

That is a significant difference. Would be helpful to know which one is more generally recognized and the source of/authority for that info.

This is an amazing discussion. Thank you.

REPLY
2 replies
rjd | @rjd | Feb 29 7:23am
In reply to @michaellavacot "In case you're not ready for a 40 minute presentation, the key takeaways are this (summary..." + (show)
@michaellavacot

In case you're not ready for a 40 minute presentation, the key takeaways are this (summary slide of the presentation):

Choose Prolia if:
Your T-Score is -2.5 or lower and you can’t get Evenity, Tymlos or Forteo.
Your T-Score is between -2.5 and -2.0 and you can’t get above -2.0 using Fosamax, Reclast or HRT

Keep taking Prolia until:
If taking Prolia less than 3 years, take until T-Scores reach -1.5
If taking Prolia 3 years or more, take until T-Scores reach -1.0

To transition off Prolia:
Start Fosamax or Reclast right after Prolia treatment (exactly 6 months after last injection)
Monitor your serum CTX level for possible dosing / redosing with Reclast

Jump to this post

This is exactly the summary I imagined the Amgen drug representative provided to my doctor at his office or the marketing presentations at doctor conferences Amgen sponsors at exotic resorts.

As I retired person, I hate the thought of all the time it will take to wade through the original source material. Would much rather contemplate the migratory patterns of the monarch butterfly,

REPLY
1 reply
Michael Lavacot | @michaellavacot | Feb 29 10:35am
In reply to @formisc "Hi Michael, Thank you for your quick response. Much as i disagee with many of your..." + (show)
@formisc

Hi Michael,
Thank you for your quick response.
Much as i disagee with many of your viewpoints, i secretly hope that you are right because, having taken 3 Prolia shots and now transitioning onto Alendronate, i am worried sick about the possibility of MVFs.
Each person will have to decide, based on advice from his/her doctor and more importantly, based on his/her own research on the appropriate treatment for this disease. Personally, i do not want to use a drug that does nothing to stimulate growth of new bone but merely coats over existing old bones especially with all the unique risks that it brings along but i acknowledge that there may be cases where such use may be appropriate.
I have not written off science and i hope that in the near future, we will have effective medicines that can treat this condition safely

Jump to this post

Hi Formisc,

I understand your viewpoint with so much data being thrown around. I was in your camp for some time before I decided to get the latest information from the doctors that are training doctors at the major osteoporosis conventions. The grand daddy of these events is the World Congress of Osteoporosis. This year is hosted in London. While I will not be flying out there, I’m hoping to get recordings of the presentations like I did last year.

To ease your mind a bit about fractures after Prolia, here is a link to the study that I describe in my Prolia presentation https://asbmr.onlinelibrary.wiley.com/doi/full/10.1002/jbmr.4335 . Dr. Serge Ferrari presented slides from this study at the 9th Central European Congress of Osteoporosis. It shows how breaks are very prevalent for patients without bisphosphonate treatment after Prolia, but it also shows how infrequent breaks were when bisphosphonates are used. See figure 5. I think you are going to be just fine on alendronate.

Your hip will likely still be in the osteoporosis range even after a year of Alendronate. Perhaps after a year, you could switch to one of the osteoanabolics to build some structure with the BMD then switch back to alendronate.

Good luck!

REPLY
1 reply
Michael Lavacot | @michaellavacot | Feb 29 10:37am

Here is Figure 5 from the study I mention above.
REPLY
Michael Lavacot | @michaellavacot | Feb 29 10:44am
In reply to @windyshores "@michaellavacot this sentence confused me: "But for some people, like myself, Evenity did not get me..." + (show)
@windyshores

@michaellavacot this sentence confused me:

"But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range."

Did you mean Prolia not bisphosphonate?

Jump to this post

Hi Windy,

Sorry for the confusion. I started my first treatment with Evenity. My spine T-Score went from -3.7 to about -3.4, which is not near the trial averages, but I still have hypercalciuria and have yet to figure out a way to get it down to a reasonable level. So being at -3.4, a bisphosphonate had no chance of getting me into a safe zone of about -2.0, so Prolia was my best option, which is what I'm on now and will likely be on for 10 years.

Mike

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