What protocols did anyone use to stop Prolia?

Posted by kgrainger @kgrainger, Jul 9 4:40pm

Did anyone stop Prolia? And if so what did you start taking?

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Hi @kgrainger - I actually made a video segment just on this topic based on all of the trainings I have attended. While I recommend you watch the whole thing, here is that segment https://youtu.be/hnj1tFUAK3M?si=04J93QrcBD2XzSSt&t=1101

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@michaellavacot

Hi @kgrainger - I actually made a video segment just on this topic based on all of the trainings I have attended. While I recommend you watch the whole thing, here is that segment https://youtu.be/hnj1tFUAK3M?si=04J93QrcBD2XzSSt&t=1101

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Hi @michaellavacot, I see you started on prolia after evenity - are you still on it?

I'm very curious about how CTX levels change during prolia treatment. Do you monitor them? If so, do you typically do the lab after the injection or right before it or both? I'm interested in understanding the pattern of change between two injections, as well as how CTX levels shift with each successive dose. If you don't mind sharing your experience, I'd really appreciate it!

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@michaellavacot

Hi @kgrainger - I actually made a video segment just on this topic based on all of the trainings I have attended. While I recommend you watch the whole thing, here is that segment https://youtu.be/hnj1tFUAK3M?si=04J93QrcBD2XzSSt&t=1101

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I tried reclast first I ended up in ER within 8 hours with a severe reaction to it. I can’t take it

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@kgrainger

I tried reclast first I ended up in ER within 8 hours with a severe reaction to it. I can’t take it

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I had a serious reaction to reclast I took it before Prolia

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@mayblin

Hi @michaellavacot, I see you started on prolia after evenity - are you still on it?

I'm very curious about how CTX levels change during prolia treatment. Do you monitor them? If so, do you typically do the lab after the injection or right before it or both? I'm interested in understanding the pattern of change between two injections, as well as how CTX levels shift with each successive dose. If you don't mind sharing your experience, I'd really appreciate it!

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Hi @mayblin - I'm still on Prolia and it looks like I'm going to be on it for quite some time. While I checked CTX and P1NP for the first two years of treatments, I have not lately. But to your point, I do believe they might drift up as shown in the trial data. As a matter of fact, I plan to test in six months right before my next injection to check on it. Attached is a snap shot of my data so you can see when I tested.

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@michaellavacot

Hi @kgrainger - I actually made a video segment just on this topic based on all of the trainings I have attended. While I recommend you watch the whole thing, here is that segment https://youtu.be/hnj1tFUAK3M?si=04J93QrcBD2XzSSt&t=1101

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@kgrainger , all - for those of you that do not want want to watch a video, here is a snapshot that shows the transition strategy for long term Prolia (greater than 2.5 years) based on the doctors that presented at the 2025 World Congress on Osteoporosis. Dr. Langdahl says that if you can't get CTX measured for what ever reason, that she give a second Reclast infusion at the 6 month period.

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@kgrainger

I had a serious reaction to reclast I took it before Prolia

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Hi @kgrainger - Well, not being able to use Reclast leaves fewer options. I can think of four options with today's medications.

1. Stay on Prolia. Long term use seems safe and effective.

2. Use Fosamax. Make sure you wait 2 hours after each weekly tablet before you have breakfast for best absorption.

3. Evenity has been show to be effective to transition off Prolia for short term usage. I have not seen long term data but it's going to be much better than not having a treatment

4. Ween off Prolia with decreasing doses. There was a very small study that Dr. Langdahl presented at the 2024 World Congress on Osteoporosis showing some success in reducing the dosages of Prolia toward the end of treatment. There was however significant variation to individual responses to the strategy. Attached is a snapshot from the presentation. You can search the reference on the bottom the slide to find the trial data.

I hope this helps.

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