Is there an alternative path after years on Prolia?

Posted by pnapkori @pnapkori, May 4, 2023

How long can I stay on Prolia? I have osteopenia and slight osteoporosis in my spine, and have been taking it for six years . I also exercise and take calcium, magnesium, d-3, and K-2. My numbers have stabilized but I am unsure if I should be doing something different. I don’t have confidence in my doctor’s knowledge on the subject! Thanks for any advice.

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@katwhisperer

Good luck getting any feedback on your tbs score. I jumped through hoops to get TBS added, then couldn't find a doctor who would give it a 2nd look. They don't seem to know or care about it. All they care about is the DXA itself.

I'm going to get another one with my DXA at the 1 year mark, as I'm on Tymlos and want to log any changes. But while I understand DXA scores, I don't understand how to read a TBS score. The clinic with TBS doesn't take my insurance (I paid for the DXA + TBS out of pocket). But consulting with their doctors would cost hundreds of dollars per visit.

Hopefully I can find a medical pro on my insurance who will interpret it for me.

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One nice thing is that Tymlos improves the microarchitecture of the bones. It would be great to compare the TBS after a year on Tymlos. But not so great to pay again. I'd be curious.

Often, now for example. this site won't allow me to link a text. This article has a nice, maybe too extensive, explanation of how to read the TBS report.
ncbi.nlm.nih.gov/pmc/articles/PMC7270440/#:~:text=different%20between%20genders.-,Among%20men%2C%20TBS%20≥%201.326%20is%20considered%20to%20be%20normal,1.357%20an

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@sheilad1

After seeing several doctors I found Keith McCormick and yes, he knows more than all of the other doctors combined. I even went with friends when they went to their rheumatologist or endocrinologist about their osteoporosis. No one knew as much as McCormick. I found Keith McCormick and yes, he knows more than all of the other doctors combined. I even went with friends when they went to their rheumatologist or endocrinologist about their osteoporosis. No one knew as much is teeth. Thanks to him I'm not taking The drugs that everyone else insisted I needed. I took a bone QUALITY test – TBS-and it was normal. No other doctors seem to be aware of the importance or even the existence of this test.

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What is a bone quality test? Is it done along with the DEXA scan? I have osteoporosis and my Dr is pushing me to take Prolia, which I really don't want to do.

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@maureenanne

I have severe osteoporosis and finally agreed to Prolia. I took one shot and it has been a nightmare with side effects. I have been searching high and low for some alternatives and getting nowhere with my docs, including endocrinologist. I finally came across Dr Keith McCormick on U tube. He is an expert on osteoporosis and all of the osteo meds. He goes into great detail on getting off Prolia safely and still maintaining bone health. He has several videos on u tube and has written a book called Great Bones. I learned more from him than all the docs put together, and I think he could help you. Best of luck!

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Are you continuing to take the Prolia, even though you had side effects? My Dr is pushing me to take this and I am afraid because of the side effects I've read about. Thanks.

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@ans

I’ve had the TBS and can probably explain some things. What are your questions.?

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I don't know what questions to ask! I haven't had or been offered a TBS test. Can you educate us with the information you think we need to know, like how important TBS bone is to the probably of fracture? What is a good score? and any other information pertinent information for all of us struggling with making a drug choice! If our TBS bone is strong, do we even medication??

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@lynn59

I don't know what questions to ask! I haven't had or been offered a TBS test. Can you educate us with the information you think we need to know, like how important TBS bone is to the probably of fracture? What is a good score? and any other information pertinent information for all of us struggling with making a drug choice! If our TBS bone is strong, do we even medication??

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@katwhisperer , @ripley , @gently -I will answer some of your questions, it won’t be today. I make no promise exactly when , but I will. I’m just extremely busy right now!!
Sorry!!

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@katwhisperer

Good luck getting any feedback on your tbs score. I jumped through hoops to get TBS added, then couldn't find a doctor who would give it a 2nd look. They don't seem to know or care about it. All they care about is the DXA itself.

I'm going to get another one with my DXA at the 1 year mark, as I'm on Tymlos and want to log any changes. But while I understand DXA scores, I don't understand how to read a TBS score. The clinic with TBS doesn't take my insurance (I paid for the DXA + TBS out of pocket). But consulting with their doctors would cost hundreds of dollars per visit.

Hopefully I can find a medical pro on my insurance who will interpret it for me.

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Wikipedia:
TBS value means that microarchitecture bone is dense, well connected with little spaces between trabeculaes. Conversely, a low TBS value means that the microarchitecture of bone is incomplete and poorly connected with wide spaces between trabeculae.

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Thanks appreciate that very much. I can wait!!!

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@ripley

Are you continuing to take the Prolia, even though you had side effects? My Dr is pushing me to take this and I am afraid because of the side effects I've read about. Thanks.

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I was due for 2nd Prolia shot on 10/6. I saw my endo in September and we both agreed that I should discontinue this medication. So, we're just going to monitor things and no more meds for now. I also have autoimmune problems...maybe that's why I had such an extreme reaction. I have many friends that have taken prolia for years with no problem. Everybody is truly different and unfortunately there is no one size fits all. I wish you the very best in your search for bone health.

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@ans

@katwhisperer , @ripley , @gently -I will answer some of your questions, it won’t be today. I make no promise exactly when , but I will. I’m just extremely busy right now!!
Sorry!!

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,@katwhisperer, @ripley ,@gently, TBS info- I think you already know the TBS test is just an extra software connected to the DEXA . It just a matter of touching a another button to provide that extra information. It's my understanding it has to be an upgraded DEXA machine to have that capability. Though I' ve seen a few references on here that stated something about taking the DEXA information and doing some kind of interpretation to get the TBS info, I do not believe that's accurate. I stand corrected if that's true.
Keep in mind Bone Strength =Density (DEXA)+Bone Quality (TBS) Trabecular Bone Score-ie. quality of the inside of the vertebrae
AS for the test results-you should always ask the lab worker or your physician to have the complete read out of the DEXA and TBS as there's info on those sheets that is more comprehensive than just getting the numerical data.I received 4 total pages of info. Page 1&2 had the regular DEXA stuff-Pg 1 a picture of L&R femoral necks and corresponding numerical data. Pg2 gives a picture and numerical DEXA values of the L1-L4 spine.
NOW as for the TBS-What's considered the Quality of the spinal bones- 2 pages
Page 1 There's 4 items of info highlighted
#1-TBS MAPPING-a color shaded picture of L1-L4, on a continuum from dark red to orange/yellow to dark green. Red= low ,poor TBS continuing to green high ,very good TBS. So you actually see your vertebrae shaded in with the varying colors and get an idea of how much of one color versus another you have.
#2 TBS Spine Results -that gives an overall numerical value that denotes the quality of the microarchitecture (trabecular) of the spine putting you in one of the 3 ranges: Normal-Partially Degraded-Degraded
#3 Fracture Risk Assessment-a color coded grid that places your score where you fall concerning fx risk
#4 Therapeutic Decision Tools-that has 2 grids of info
a-The Frax 10 yr probability of fracture: It compares fx risk and then an adjusted fx risk with the TBS info included.
b-The BMD T Score- that compares your DEXA-T scores alone, and then with the TBS factored in

Page 2 -there are two items
#5 -Detailed Spine Results -this gives the TBS of each individual vertebra L1-L4,then there are many other values , these give values from one vertebra to another . For example, on mine after the individual values are given then there's a L1-L4 value. That means they have taken the vertebrae from L1 to L4 and calculated what that actual TBS is. Then the grid shows some of these values. L1-L4(L3) that means they calculate the value from L1 to L4 but subtract out the L3 vertebrae value, etc.. So there are many combinations shown.
#6- is Conclusion-where a discussion of the info is captured.
#7 Notes and References-I guess it's the sources where and how they came up with these ideas that support the TBS test.
I hope that was helpful!!
Even though I had already had a spine fx I wanted it just to understand it better and get a clearer view of my situation. So my overall score, to give clarity, was TBS L1-L4=1.234, which put me .004 above degraded as degraded is 1.23. So though I came out as Partially Degraded can you see how I am at the extreme edge of that range.
Go out and get the test if you feel like you want or need to have more information. I did a lot of work to find a place and get this done, but for me it was worth it. Good luck!!

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