Recently diagnosed with severe osteoporosis of lumbar spine -3.4 T sco

Posted by doglover1962 @doglover1962, Jan 26 12:46pm

I just saw an endocrinologist (referred by my OB/GYN) and all of my bloodwork came out within normal ranges. Although she did not test my sex hormones (which I believe is the cause of my sudden diagnosis - went from osteophenia of lumbar spine in July 2021 and repeated my bone density test in January 2023) (2 1/2 years later) which revealed my t score of -3.4 (from -2.3). I went through menopause at age 60 as well in 2022. She now wants me to take a 3 step therapy program with either Evenity, or Foreto or Tylmos and then after this therapy is finished to go on Prolia several years and then take an oral or iv bisphosphonate. Has anyone else been on any of these medications and did you have success with bone density and did you experience any severe side effects?

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Just learned that my insurance does not want to cover Evenity and has approved me of starting Prolia injections 2x a year at which my endocrinologist will redo my bone density in 2 years and if it doesn't help, then they will approve Evenity. Anybody else tried Prolia first and did they have any improvements with your t score? I'm really trying to get to the bottom as to why my t score went down 14% in 2 1/2 years. Should I get my stomach gut checked out? Help!

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@doglover1962

Just learned that my insurance does not want to cover Evenity and has approved me of starting Prolia injections 2x a year at which my endocrinologist will redo my bone density in 2 years and if it doesn't help, then they will approve Evenity. Anybody else tried Prolia first and did they have any improvements with your t score? I'm really trying to get to the bottom as to why my t score went down 14% in 2 1/2 years. Should I get my stomach gut checked out? Help!

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@doglover1962 it is recommended to do Evenity first and then Prolia, not the other way around. Bone builder before anti-resorptive. And it is not certain that Evenity will prevent rebound after Prolia: what I have been told is that you have to do Reclast.

If you do Prolia, there is a study that shows effectiveness in combination with Forteo or Tymlos, which mimics the dual action of Evenity. Then you do Reclast to get off the Prolia.

Watch Dr. Ben Leder's video on Youtube entitled "Combinations and Sequencing."

Insurance policies need to change! I wonder if you doc could advocate for you. Unless your DEXA's are mild. If you don't tolerate Prolia, they might cover Evenity then!

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@windyshores

@doglover1962 it is recommended to do Evenity first and then Prolia, not the other way around. Bone builder before anti-resorptive. And it is not certain that Evenity will prevent rebound after Prolia: what I have been told is that you have to do Reclast.

If you do Prolia, there is a study that shows effectiveness in combination with Forteo or Tymlos, which mimics the dual action of Evenity. Then you do Reclast to get off the Prolia.

Watch Dr. Ben Leder's video on Youtube entitled "Combinations and Sequencing."

Insurance policies need to change! I wonder if you doc could advocate for you. Unless your DEXA's are mild. If you don't tolerate Prolia, they might cover Evenity then!

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Yes, I agree with you that you have to take an anabolic medication first before Prolia. I have asked my doctor to see if my insurance will cover Forteo. I did speak to a representative at my insurance company's specialty pharmacy and they did indicate it was covered through the mail pharmacy. I will see what they say when my doctor inquiries about Forteo. My t score is -3.4. Went from -2.3 in my lumbar spine to -3.4 in 2 1/2 years. Going to see a functional doctor to check my gut as endocrinologist didn't do that. Could be that I'm not absorbing all nutrients through my diet and supplements?

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@doglover1962

Yes, I agree with you that you have to take an anabolic medication first before Prolia. I have asked my doctor to see if my insurance will cover Forteo. I did speak to a representative at my insurance company's specialty pharmacy and they did indicate it was covered through the mail pharmacy. I will see what they say when my doctor inquiries about Forteo. My t score is -3.4. Went from -2.3 in my lumbar spine to -3.4 in 2 1/2 years. Going to see a functional doctor to check my gut as endocrinologist didn't do that. Could be that I'm not absorbing all nutrients through my diet and supplements?

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In my experience menopause might do that! Was your PTH checked? Was your calcium okay? The functional med doc can check those things. Good luck!

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@windyshores

In my experience menopause might do that! Was your PTH checked? Was your calcium okay? The functional med doc can check those things. Good luck!

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Yes all lab work came out normal. Even checked for multiple myeloma and that came back benign. It went through menopause late (age 60) and had irregular periods and on and off hot flashes for several years. Both my sisters are older than me and went through menopause in early 50s. They don't eat as well as I do and they have had osteophenia for several years. I also have been walking for decades and started some core exercises as well as light weight lifting back in 2021. Thank you for your concerns and replying to my comment.

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@cpd54

I would highly recommend reading Dr Keith McCormicks books before starting drug therapy. One thing he says is to take Prolia no longer than 2 years. There are also 2 bone turnover markers he recommends being tested for, CTX and P1NP to help determine what type of drug you need.
Good luck on your journey.

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What range does he says is ideal for CTX and P1NP?

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@fearfracture

What range does he says is ideal for CTX and P1NP?

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@fearfracture the "normal" range is wide. I think it is more about getting a baseline and seeing if things are going up or down, though of course values can be below or above range.

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Interesting that the 5 tests for which I have results are all in his acceptable range. And those are my baseline numbers as I have not started any treatment since I refuse to take 5.7 mg/kg of Evenity. The studies were done using 3 mg/kg or less.

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