1. < Osteoporosis & Bone Health

Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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njhornung | @normahorn | Sep 6, 2023

Below are excerpts from a 2017 publication on MBST, This was before Tymlos and Evenity but I doubt much has changed. I found them very interesting. (Hopefully the link copied properly)

Nuclear magnetic resonance therapy (MBST) in the treatment of osteoporosis. Case report study - PMC (nih.gov)

Introduction

Despite various pharmacological treatments the problem of osteoporosis is not yet solved nor decreased (1–3). About the application of bone modifying drugs existing real life data do not support clear relevant anti-fracture effects (4, 5). On the contrary, new problems appeared such as drug’s adverse event and fractures after long term of pharmacotherapy. Additionally, there is still an absence f any early prevention and a lack of education about the bone and skeleton in general.
A big problem related to osteoporosis is also the fact that there is no diagnostic method able to measure the bone strength, on which depends fracture risk. BMD, usually used in clinical practice as a diagnostic “golden standard”, is not reliable for assessing the risk of fractures, especially for assessing therapeutic effect. The best evidence of a successful treatment is the resistance of the bone on the strong force which happens in severe trauma, but it is not possible to make a double blind, prospective, placebo controlled clinical study based on purposely exposing patients to accidents with potential fracture trauma. However, well documented case reports could be important evidence despite the fact those aren’t prospective double-blind, randomised studies

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1 reply
ans | @ans | Sep 6, 2023
In reply to @gravity3 "I'm 75 and struggling with the same decision. I've cancelled my first evenity injection and may..." + (show)
@gravity3

I'm 75 and struggling with the same decision. I've cancelled my first evenity injection and may do it again until I feel any sense of certainty. I have been on forteo and bisphosphonates. Currently on a break. Meanwhile I have started Osteostrong (would love to get feedback) and starting my second month. Also considering going to Europe and having MBST treatment. Heard about this through an OsteoBoston you tube video. Would also like to know if anyone has received MBST.

Jump to this post

Do your homework in Osteostrong . There’s a lot of information out there telling people to stay clear!! Many have fractured doing their program. They take no liability for outcomes. I wouldn’t do it , but that’s me … look into it further . There was a thread not long ago and will probably surface again all about this!!! Good luck!!

REPLY
1 reply
gravity3 | @gravity3 | Sep 6, 2023
In reply to @normahorn "Below are excerpts from a 2017 publication on MBST, This was before Tymlos and Evenity but..." + (show)
@normahorn

Below are excerpts from a 2017 publication on MBST, This was before Tymlos and Evenity but I doubt much has changed. I found them very interesting. (Hopefully the link copied properly)

Nuclear magnetic resonance therapy (MBST) in the treatment of osteoporosis. Case report study - PMC (nih.gov)

Introduction

Despite various pharmacological treatments the problem of osteoporosis is not yet solved nor decreased (1–3). About the application of bone modifying drugs existing real life data do not support clear relevant anti-fracture effects (4, 5). On the contrary, new problems appeared such as drug’s adverse event and fractures after long term of pharmacotherapy. Additionally, there is still an absence f any early prevention and a lack of education about the bone and skeleton in general.
A big problem related to osteoporosis is also the fact that there is no diagnostic method able to measure the bone strength, on which depends fracture risk. BMD, usually used in clinical practice as a diagnostic “golden standard”, is not reliable for assessing the risk of fractures, especially for assessing therapeutic effect. The best evidence of a successful treatment is the resistance of the bone on the strong force which happens in severe trauma, but it is not possible to make a double blind, prospective, placebo controlled clinical study based on purposely exposing patients to accidents with potential fracture trauma. However, well documented case reports could be important evidence despite the fact those aren’t prospective double-blind, randomised studies

Jump to this post

Good info. Thanks

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windyshores | @windyshores | Sep 6, 2023

"fractures after long term of pharmacotherapy"

This is not true of Forteo or Tymlos and Evenity is only one year. So this must refer to bisphosphonates and Prolia, I would think.

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njhornung | @normahorn | Sep 6, 2023

The paper was published in 2017, as I had mentioned, so it predated Tymlos and Evenity.

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rola | @rola | Sep 7, 2023

Just reading abt this MBST... A little more info below.

I finally ordered a vibration plate, VT007, it was in my price range, marodyne was not😉 . I thought it was worth a try.

https://pubmed.ncbi.nlm.nih.gov/28453453/
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1 reply
dee1955 | @dee1955 | Sep 8, 2023
In reply to @rola "Just reading abt this MBST... A little more info below. I finally ordered a vibration plate,..." + (show)
@rola

Just reading abt this MBST... A little more info below.

I finally ordered a vibration plate, VT007, it was in my price range, marodyne was not😉 . I thought it was worth a try.

https://pubmed.ncbi.nlm.nih.gov/28453453/

Jump to this post

I looked up the marodyne 3,200.00 wow that's nuts .the other one I have .I like it .

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1 reply
dee1955 | @dee1955 | Sep 8, 2023
In reply to @dee1955 "I looked up the marodyne 3,200.00 wow that's nuts .the other one I have .I like..." + (show)
@dee1955

I looked up the marodyne 3,200.00 wow that's nuts .the other one I have .I like it .

Jump to this post

I meant marodyne

REPLY
gravity3 | @gravity3 | Sep 8, 2023
In reply to @ans "Do your homework in Osteostrong . There’s a lot of information out there telling people to..." + (show)
@ans

Do your homework in Osteostrong . There’s a lot of information out there telling people to stay clear!! Many have fractured doing their program. They take no liability for outcomes. I wouldn’t do it , but that’s me … look into it further . There was a thread not long ago and will probably surface again all about this!!! Good luck!!

Jump to this post

There is a new study due to be published soon in one of the orthopedic journals

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