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Advanced osteoporosis and need advice picking best drug

Posted by myhealthjourney @myhealthjourney, 6 days ago

I had spinal fusion 3 months ago when discovered advanced osteoporosis. Dr. Started me on Evenity. Hi BP immediately at the infusion center. Then ended up in ER next night with even higher BP. Now it seems this drug is too dangerous. Struggling with best 2nd choice. Tymlos next best for building bone but just had mohs treatment for BASO/squamous skin cancer. Hence my dr. Is hesitant and is suggesting Prolia. However I concerned that Prolia won’t do the trick. I’m really torn. I’m grateful for any advice. My dexa is -4.2. Not good’ I’m very concerned about this spinal fusion healing properly and not breaking
amy bones. Trying to heal and get on won’t my life!
Thanks for listening!

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brendammc | @brendammc | 3 days ago

Saw your last message and tried to reply.?? I’m taking note of all your wise and helpful info. Thanks. The journey continues!! 🤔

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newenglandtransplant | @newenglandtransplant | 3 days ago
In reply to @gently "brendammc, Forteo crafts a fine bone. It takes it's time making sure that all the older..." + (show)
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brendammc,
Forteo crafts a fine bone. It takes it's time making sure that all the older bone is removed before laying down new bone. It can reconstruct areas of lost bone rebuilding even the missing trabeculae scaffold.
Evenity builds thick bone fast without any preparation. You can see why this would advantage someone whose bones were on the verge of collapse. But it isn't great bone. It doesn't have the communication channels needed to recalibrate the bone according to our activities. This bone accumulates on the outside of existing bone. It doesn't have the flex you need if you want to remain active.
Worse, in my way of thinking, are the cardiac risks, The drug was rejected by the FDA initially because of this, then it was approved with the black box warning. After a few years of use, the black box warning was enhanced. But most of us will die of cardiac issues. I set a hard shoulder against Evenity, which deserves some skepticism. And I hope I'm wrong and that Evenity's use by the brave proves me wrong.
I see a endocrinologist whose focus is osteoporosis. He's run the most efficient office imaginable. And I genuinely like him.

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Hi, @gently. I really appreciate the insights you share in this group. They’ve been quite helpful to me along the way. It’s apparent that you are knowledgeable and seem to closely follow the multitude of data available. I’d love to learn more about the impact of Evenity’s mechanism of action on bone quality. I wonder if you could direct me to any studies you find particularly helpful with this, either here or via direct message? I’ve dug around a good bit and am still not quite clear on this. As this is the drug I’m currently taking, I’d like to understand this better. Many thanks for any pointers you are able to provide.

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gently | @gently | 3 days ago

newenglandtransplant,
this article https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04563-z.
From 2018 we have Demster. On page 32 he talks about three types of bone growth. https://www.ofnm.org/wp-content/uploads/2022/08/4-Dempster-130-230-8-5.pdf Evenity is the middle image, though the image neglects that the new bone is laid over fissured, avascular bone. Which is why with all the medications, except those that remodel bone (Tymlos, Forteo), risk bone necrosis. And bone that is laid without osteoclastics creates smaller bone cells. At least according to Ego Seeman. I'll find that link.
There is Doug Lucas he has an interesting riff on Evenity. https://www.youtube.com/watch?v=uZ2iXQ7wpKY
Start at 2:24. He sells supplements and himself. Don't buy anything, though.
One other interesting thing from Cosman (I think) is that if you take Evenity for three months without following with another medication in another three months, you'll have lost the gain. In 6 to twelve months after the full year of Evenity the gains are gone.
Have you considered what you'll take after Evenity. The amgen advert likes Evenity to Prolia.
I hope you find vital information that I've missed.
I'm not ready to end this post, but the dentist wants to hurt me this morning.

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newenglandtransplant | @newenglandtransplant | 2 days ago

Thank you, @gently , for taking the time to point me to this information. I’m due for my last injection of Evenity in early September, and I’ll be seeing my doctor at the end of this month to discuss next steps. As I’m currently 53, Prolia is a hard no for me at this time. It seems likely that I’ll need at least one more course of anabolic over the course of the next few decades, so I’ve been keen to better understand your thinking on Evenity. I know the decision I make next may have impact on future decisions so want to be as informed as possible. Thank you again for sharing!

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