Advanced osteoporosis and need advice picking best drug

Posted by myhealthjourney @myhealthjourney, 4 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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myhealthjourney,
there is no longer a suspicion that Tymlos is causitive or even associative with cancer. The black box has been removed by the FDA. It was cancer of the bone anyway and not skin cancer.
Tymlos is often prescribed to patients before, during and after surgery because it increase hardware integration with the bone. It is a hands down better choice than Evenity or Prolia. Prolia builds heavy bone rapidly, but dosesn't help with hardware integration. It also has some best-avoided risks that Tymlos doesn't, Forteo would also be a great choice, Its the same class of drug as Tymlos and has the same mechanism of action and the same advantage of hardware integration (especially screws). https://www.drugdiscoverytrends.com/fda-approves-removal-of-boxed-warning-from-label-for-osteoporosis-drug-tymlos/ May you heal rapidly and get on with life joyously without pain.

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Ask Doctor about Reclast infusion.

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the, hi. If you had some dexa numbers, the answers would be more careful. I'd suggest Forteo as the very best medication available, especially if low dexa numbers were in the spine. If your hips are at risk, there can be no better medication than Tymlos. These two medications are not only the safest but they build bone removing older damaged bone first.
Reclast increases bmd by collecting older fissured bone. This bone is more brittle with fewer blood vessesl and fewer nerves, it has good uses and does help to prevent fracture.
The newer monoclonal antibody drugs add bone without removal but they add bone on the outside of existing bone. They can be very useful in certain circumstances. If you were on the verge of fracture and needed a quick scaffold, they'd be valuable. Both incur the risk of negative side effects, that make them an unwise choice for some.
There are actually few medications for osteoporosis. The antiresorptives--bisphosphonates. The anabolics bone builders--Tymlos and Forteo. And the monoclonal antibodies: Prolia and Evenity. Prolia is considered antiresorptive and anabolic, and Evenity is considered anabolic and antiresorptive. Because of the potential side effects of the last two the latest, I think they should be avoided, except in extreme cases. Some patients have success with each.

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Profile picture for gently @gently

the, hi. If you had some dexa numbers, the answers would be more careful. I'd suggest Forteo as the very best medication available, especially if low dexa numbers were in the spine. If your hips are at risk, there can be no better medication than Tymlos. These two medications are not only the safest but they build bone removing older damaged bone first.
Reclast increases bmd by collecting older fissured bone. This bone is more brittle with fewer blood vessesl and fewer nerves, it has good uses and does help to prevent fracture.
The newer monoclonal antibody drugs add bone without removal but they add bone on the outside of existing bone. They can be very useful in certain circumstances. If you were on the verge of fracture and needed a quick scaffold, they'd be valuable. Both incur the risk of negative side effects, that make them an unwise choice for some.
There are actually few medications for osteoporosis. The antiresorptives--bisphosphonates. The anabolics bone builders--Tymlos and Forteo. And the monoclonal antibodies: Prolia and Evenity. Prolia is considered antiresorptive and anabolic, and Evenity is considered anabolic and antiresorptive. Because of the potential side effects of the last two the latest, I think they should be avoided, except in extreme cases. Some patients have success with each.

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You seem to have very useful information. Can you recommend a site soI can research also? Big thanks. I’m trying to decide what to do. I’m thinking I will start on meds although scary I’m 77. In 2019 had 25% risk of fracture in spine. 11% in hip. Then Alendronate was recommended to try. If not tolerated to go to Reclast for 3-5 years with a break for 3-4 years. Last option would be Prolia.
Now I’ve had 2 thoracic fractures from lifting perhaps a new plan would be advised. My GP has given me the alendrnate prescription. I want to talk to an osteo specialist before I start and get Dental check.

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I think I replied instead of posting comment. Hope you can see it.

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Profile picture for brendammc @brendammc

You seem to have very useful information. Can you recommend a site soI can research also? Big thanks. I’m trying to decide what to do. I’m thinking I will start on meds although scary I’m 77. In 2019 had 25% risk of fracture in spine. 11% in hip. Then Alendronate was recommended to try. If not tolerated to go to Reclast for 3-5 years with a break for 3-4 years. Last option would be Prolia.
Now I’ve had 2 thoracic fractures from lifting perhaps a new plan would be advised. My GP has given me the alendrnate prescription. I want to talk to an osteo specialist before I start and get Dental check.

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Thank you so much for all of this information. I am also struggling with which medication to take. I have severe osteoporosis and have repeated rib fractures. I recently fell (February 2025) and resulted in multiple sacral fractures. I have severe lumbar pain and hip pain. Doctor is recommending evenity ! I have taken Prolia and Reclast in the past five years and did not do well with the side effects. Any information is appreciated.
Thanks !

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Profile picture for brendammc @brendammc

You seem to have very useful information. Can you recommend a site soI can research also? Big thanks. I’m trying to decide what to do. I’m thinking I will start on meds although scary I’m 77. In 2019 had 25% risk of fracture in spine. 11% in hip. Then Alendronate was recommended to try. If not tolerated to go to Reclast for 3-5 years with a break for 3-4 years. Last option would be Prolia.
Now I’ve had 2 thoracic fractures from lifting perhaps a new plan would be advised. My GP has given me the alendrnate prescription. I want to talk to an osteo specialist before I start and get Dental check.

Jump to this post

brendammc,
I'm so sorry about those fractures. They can be miserable.
it's a really good idea to have a dental check. But with Forteo you wouldn't need to wait. Forteo and Tymlos are the two osteoporosis medications that increase bone in the jaw. They don't cause osteonecrosis and are the medications used to help resolve decay of the jaw.
They both also speed the healing of fractures.
I'd want to begin research by knowing the "mechanism of action" of any medication under consideration. You can find that in the package inserts, but on the internet some drug companies have produced videos cartoons of how their drug works. https://www.youtube.com/watch?v=UMFTZVOPRAs
The Sante Fe Bone Symposium https://www.ofnm.org/santa-fe-bone-symposium/ provides videos of presentations from their meetings. The don't provide videos of the discussions that ensue. And it is good to remember that the presentations are theory and hypothesis.
It is great your are doing the research.
oh, I'm 74 and started Forteo at 72.

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Profile picture for gently @gently

brendammc,
I'm so sorry about those fractures. They can be miserable.
it's a really good idea to have a dental check. But with Forteo you wouldn't need to wait. Forteo and Tymlos are the two osteoporosis medications that increase bone in the jaw. They don't cause osteonecrosis and are the medications used to help resolve decay of the jaw.
They both also speed the healing of fractures.
I'd want to begin research by knowing the "mechanism of action" of any medication under consideration. You can find that in the package inserts, but on the internet some drug companies have produced videos cartoons of how their drug works. https://www.youtube.com/watch?v=UMFTZVOPRAs
The Sante Fe Bone Symposium https://www.ofnm.org/santa-fe-bone-symposium/ provides videos of presentations from their meetings. The don't provide videos of the discussions that ensue. And it is good to remember that the presentations are theory and hypothesis.
It is great your are doing the research.
oh, I'm 74 and started Forteo at 72.

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Big thanks. I’ve checked things out and see Forteo is best for the spine. And looks like the drug recommended after fractures. Or Evenity which I’m not so sure of. Any thoughts on it? Did you see a specialist? I very much appreciate your sharing your thoughts.

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Hello, I just completed one year on Tymlos my worst number was -3.7. I am 65 years old and have no other health issues. I do regularly work out and am very active. I also had a mohs surgery for basil cell cancer and was still put on Tymlos although it was 8 years ago. I was very hesitant to go on any medication but have tolerated the Tymlos very well. Initially I was very fatigued but after a few weeks my body adjusted but there are days when I do feel very tired but I just try to power through. I just had my bone scan and had 30 % improvement in my spine. Only 10% improvement in the other areas though. Will stay on Tymlos for another 6 months, possibly up to the 24 month mark as Tymlos is only approved for 24 months. Am now researching what to go on next. I do not want to go on Prolia and would much rather a more holistic approach to keep my gains. My Dr. tells me that supplements will not help but I will do my own research. If there is anyone out there who started with Tymlos what did you follow up with? Good luck to you and if you are able to go on Tymlos maybe it can help you too! The injections are a little nerve wracking at first but then easy peasy. Best of Luck to you!!

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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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