What kind of plans are possible if you are looking ahead for many year

Posted by serious @serious, Jul 30, 2023

I am reading that Evenity is for one year; forteo/Tymlos for 2 years; Reclast for 3 years; bisphosphonates for 5 years; and Prolia for ten years of usage. I am also reading that Prolia requires a relay drug urgently if you stop taking it which may be one that you have already exhausted your life time quota. So, what are reasonable plans and sequencing if you are going to be on some sort of medication for a long period of time? For one thing, it seems like you cannot avoid Prolia as it is approved for the longest period of time of all of these.

Any thoughts?

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Well this is exactly the problem and you articulated it really well @serious
This is an issue that will hopefully get doctors to prescribe meds differently, not for osteopenia or even early osteoporosis. If we are 80, there is not problem, but otherwise!

There are also issues with sequencing. According to my doc, it should probably go Tymlos or Forteo, then Evenity if needed (once studies prove this), then Reclast to "lock in." Docs are told by insurance to prescribe bisphosphonates or Prolia first, and the reality is that these anti-resorptives affect the effectiveness of the bone building meds.

Forteo has been approved for more than 2 years and Tymlos may follow. There is a study on Forteo use for 3 years, according to my endo.

My docs will not use Prolia unless absolutely needed- if a person's kidneys cannot handle Reclast, for instanc. Dr. McCormick and my doc say that Tymlos and Forteo don't work after Prolia so you only have Reclast to switch to. They said you also cannot do Evenity after Prolia, only the other way around.

Reclast stays in the system a long time so with proper monitoring, we might be able to take med breaks between infusions and even try some more holistic methods if our bone density has improved enough for that to be safe to try. My doc says in the future I could also return to a bone builder if needed.

Meanwhile I am purchasing hip pads and cleats for ice, avoiding opening windows or lifting while leaning and generally trying to stay safe!

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I love this question and such a thoughtful answer by @windyshores. Many thanks!

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Why don’t doctors try nutritional “intervention” first? And finding out if there is an underlying condition, such as a digestive issue that would led to nutrient malabsorption. I for one was severely Vitamin D deficient. I am going to go the route of nutrition first along with exercise. After a dexa next year, I’ll reevaluate. I’m only 68 and have Sjogerns.

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@cpd54

Why don’t doctors try nutritional “intervention” first? And finding out if there is an underlying condition, such as a digestive issue that would led to nutrient malabsorption. I for one was severely Vitamin D deficient. I am going to go the route of nutrition first along with exercise. After a dexa next year, I’ll reevaluate. I’m only 68 and have Sjogerns.

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@cpd54 I hope your DEXA scores have not been too bad. In early days I had a copy of Keith McCormick's book "The Whole Body Approach to Osteoporosis."

But bone loss is inevitable after menopause regardless of nutritional status and exercise. (For me it was also exacerbated by cancer treatment.) At some point many of us are going to need meds.

The question is when and in what sequence? Dr. Ben Leder has a great video online about sequencing, and Keith McCormick's new book "Great Bones" has a lot of info on meds and sequencing as well.

There has to be a balance between delaying meds that might be too early, and doing meds too late to prevent fractures. I was about to go on Tymlos when COVID hit and I was afraid that Tymlos, like Forteo in the past, would trigger afib and land me in the hospital. So I waited on Tymlos, feeling strong at the time.

Net result: spinal fractures, pain and disability. Osteoporosis does not have symptoms and we can feel strong and confident, only to have one unwise movement cause fractures. Fractures' effects don't really go away even if they technically "heal."

That said, doctors were prescribing for osteopenia and early osteoporosis, which meant running out of time, as @serious described. Doctors need to have a more long term view. And worst of all, insurance forces them to prescribe bisphosphonates or Prolia first, which then interfere with effectiveness of bone builders like Forteo, Tymlos and Evenity and also make follow up more problematic.

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@windyshores

@cpd54 I hope your DEXA scores have not been too bad. In early days I had a copy of Keith McCormick's book "The Whole Body Approach to Osteoporosis."

But bone loss is inevitable after menopause regardless of nutritional status and exercise. (For me it was also exacerbated by cancer treatment.) At some point many of us are going to need meds.

The question is when and in what sequence? Dr. Ben Leder has a great video online about sequencing, and Keith McCormick's new book "Great Bones" has a lot of info on meds and sequencing as well.

There has to be a balance between delaying meds that might be too early, and doing meds too late to prevent fractures. I was about to go on Tymlos when COVID hit and I was afraid that Tymlos, like Forteo in the past, would trigger afib and land me in the hospital. So I waited on Tymlos, feeling strong at the time.

Net result: spinal fractures, pain and disability. Osteoporosis does not have symptoms and we can feel strong and confident, only to have one unwise movement cause fractures. Fractures' effects don't really go away even if they technically "heal."

That said, doctors were prescribing for osteopenia and early osteoporosis, which meant running out of time, as @serious described. Doctors need to have a more long term view. And worst of all, insurance forces them to prescribe bisphosphonates or Prolia first, which then interfere with effectiveness of bone builders like Forteo, Tymlos and Evenity and also make follow up more problematic.

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@windyshores - Thank you for your presence on this site. You have a way of summarizing some seemingly complicated issues in few words!! We all thank you and I’ve learned much from you!!!

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@windyshores

Well this is exactly the problem and you articulated it really well @serious
This is an issue that will hopefully get doctors to prescribe meds differently, not for osteopenia or even early osteoporosis. If we are 80, there is not problem, but otherwise!

There are also issues with sequencing. According to my doc, it should probably go Tymlos or Forteo, then Evenity if needed (once studies prove this), then Reclast to "lock in." Docs are told by insurance to prescribe bisphosphonates or Prolia first, and the reality is that these anti-resorptives affect the effectiveness of the bone building meds.

Forteo has been approved for more than 2 years and Tymlos may follow. There is a study on Forteo use for 3 years, according to my endo.

My docs will not use Prolia unless absolutely needed- if a person's kidneys cannot handle Reclast, for instanc. Dr. McCormick and my doc say that Tymlos and Forteo don't work after Prolia so you only have Reclast to switch to. They said you also cannot do Evenity after Prolia, only the other way around.

Reclast stays in the system a long time so with proper monitoring, we might be able to take med breaks between infusions and even try some more holistic methods if our bone density has improved enough for that to be safe to try. My doc says in the future I could also return to a bone builder if needed.

Meanwhile I am purchasing hip pads and cleats for ice, avoiding opening windows or lifting while leaning and generally trying to stay safe!

Jump to this post

I got Tymlos first as my sister said I needed an injectionable and when I saw what Prolia had done to my mother's teeth, I quickly got over my needle phobia. And, for those who a re not needle- comfortable, these needles are so small that I must put on reading glasses to make
sure the needle is present .

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@sarahstuart

I got Tymlos first as my sister said I needed an injectionable and when I saw what Prolia had done to my mother's teeth, I quickly got over my needle phobia. And, for those who a re not needle- comfortable, these needles are so small that I must put on reading glasses to make
sure the needle is present .

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What did Prolia do to your mother's teeth?

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that's a great synopsis of the various pharmaceutical protocols available and a great question which we all ponder once getting this diagnosis. One thing you might add to that list of potential interventions is bioidentical hormones. If you are within that 10 year window post menopause, it's something to consider. Even post 10 years, something to explore. Risks were highly and inappropriately hyped and overblown after the flawed WHI study was halted but now there is a general recognition that benefits may actually far outweigh risks and the tide is turning in favor of their impact on health and bone density. Even if you have a family history of breast cancer or have had bc yourself, you might possibly use them. The increased risk is very, very small vs. the overall risks of pharmaceutical formulations of which there are many. After much research and consideration for my own protocol, and after an intensive and targeted natural approach that unfortunately led me into more severe osteoporosis, I ultimately had to have a pharmaceutical intervention to regain density lost and chose to go on Forteo for 2 years. Since you need to immediately follow up with something to prevent the loss of gains you made, I weighed all options and decided to follow up with low dose, transdermal estrogen and oral progesterone as the safest protocol I could come up with. I am 67 and have been on hormones for 5 years and have mostly maintained density with slight variation in my dexa scores. I wish I had gone on it earlier and I hope that more women start considering this in their tool kit of options.
If you want to better understand the risks and benefits of HRT, some doctors to read or follow are Dr Avrum Bluming, Dr Felice Gersh and Dr Mary Claire Haver. Dr Bluming has co-authored a book called Estrogen Matters. Dr Haver is very visable on Instagram and offers clear and concise snapshots into studies supporting HRT use as well as study-based rebuttals to common misconceptions and misrepresentations in the media and particularly on social media. Dr Felice Gersh is an integrative gynecologist and a hormone expert for decades.

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@teb

that's a great synopsis of the various pharmaceutical protocols available and a great question which we all ponder once getting this diagnosis. One thing you might add to that list of potential interventions is bioidentical hormones. If you are within that 10 year window post menopause, it's something to consider. Even post 10 years, something to explore. Risks were highly and inappropriately hyped and overblown after the flawed WHI study was halted but now there is a general recognition that benefits may actually far outweigh risks and the tide is turning in favor of their impact on health and bone density. Even if you have a family history of breast cancer or have had bc yourself, you might possibly use them. The increased risk is very, very small vs. the overall risks of pharmaceutical formulations of which there are many. After much research and consideration for my own protocol, and after an intensive and targeted natural approach that unfortunately led me into more severe osteoporosis, I ultimately had to have a pharmaceutical intervention to regain density lost and chose to go on Forteo for 2 years. Since you need to immediately follow up with something to prevent the loss of gains you made, I weighed all options and decided to follow up with low dose, transdermal estrogen and oral progesterone as the safest protocol I could come up with. I am 67 and have been on hormones for 5 years and have mostly maintained density with slight variation in my dexa scores. I wish I had gone on it earlier and I hope that more women start considering this in their tool kit of options.
If you want to better understand the risks and benefits of HRT, some doctors to read or follow are Dr Avrum Bluming, Dr Felice Gersh and Dr Mary Claire Haver. Dr Bluming has co-authored a book called Estrogen Matters. Dr Haver is very visable on Instagram and offers clear and concise snapshots into studies supporting HRT use as well as study-based rebuttals to common misconceptions and misrepresentations in the media and particularly on social media. Dr Felice Gersh is an integrative gynecologist and a hormone expert for decades.

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I had breast cancer that was driven by estrogen (95%) and progesterone (80%). Since one out of eight women gets breast cancer at some point, and 80% of them are estrogen-drive, I do wonder about the safety of HRT. I know the pendulum has been swinging back in favor but I would love to know why those fears of cancer from HRT are now being refuted by some.
https://www.webmd.com/breast-cancer/breast-cancer-types-er-positive-her2-positive#:~:text=About%2080%25%20of%20all%20breast%20cancers%20are%20%E2%80%9CER-positive.%E2%80%9D,They%20grow%20in%20response%20to%20another%20hormone%2C%20progesterone.

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@windyshores

I had breast cancer that was driven by estrogen (95%) and progesterone (80%). Since one out of eight women gets breast cancer at some point, and 80% of them are estrogen-drive, I do wonder about the safety of HRT. I know the pendulum has been swinging back in favor but I would love to know why those fears of cancer from HRT are now being refuted by some.
https://www.webmd.com/breast-cancer/breast-cancer-types-er-positive-her2-positive#:~:text=About%2080%25%20of%20all%20breast%20cancers%20are%20%E2%80%9CER-positive.%E2%80%9D,They%20grow%20in%20response%20to%20another%20hormone%2C%20progesterone.

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i was on Evista for several years when i was younger. My doctor took me off of it as she said as I got older the changes of blood clots and strokes increased and she didn’t feel the trade off was justified.

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