Support For Those Quitting Prolia

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

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.

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

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... "

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.

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

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

@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?