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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@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!

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Well said. I am struggling with this very issue. I am 64. If I start with Evenity for a year and successfully build back my bone, can I conceivably treat myself holistically, my preferred next step? No one really talks about this approach to sequencing. All I have been reading is sequencing with more meds. I am willing to try Evenity if I know there is a non-drug solution at the end.

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@gretch19

Well said. I am struggling with this very issue. I am 64. If I start with Evenity for a year and successfully build back my bone, can I conceivably treat myself holistically, my preferred next step? No one really talks about this approach to sequencing. All I have been reading is sequencing with more meds. I am willing to try Evenity if I know there is a non-drug solution at the end.

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Keith McCormick, the chiropractor expert on osteoporosis, wrote The Whole Body Approach to Osteoporosis and more recently Great Bones (lots on meds). He himself did meds and then relied on holistic methods afterwards.

If you try Evenity and then transition to Reclast, then, according to my doc and McCormick, you may be able to take med breaks and in the meantime try natural meds. The situation can be monitored with the CTX and maybe P1NP blood tests.

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@dianestanley

What did Prolia do to your mother's teeth?

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My mother lost all of her teeth after thousands of dollars trying to save them. And to add insult, she had to be on a liquid diet. She was between 98 -102 when this was going on. My job was to make sure she had a supply of good chocolates ($35/lb).

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@sarahstuart

My mother lost all of her teeth after thousands of dollars trying to save them. And to add insult, she had to be on a liquid diet. She was between 98 -102 when this was going on. My job was to make sure she had a supply of good chocolates ($35/lb).

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My doctor is putting me on Prolia after Evenity but after reading so much about this drug, I don't want to do all of the years he's discussed. I have taken care of my teeth all of my life and don't want to lose any more than I have had to. I am sure that your mom enjoyed those chocolates!

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@dianestanley

My doctor is putting me on Prolia after Evenity but after reading so much about this drug, I don't want to do all of the years he's discussed. I have taken care of my teeth all of my life and don't want to lose any more than I have had to. I am sure that your mom enjoyed those chocolates!

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Why is ReClast not an option for you now?

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@serious

Why is ReClast not an option for you now?

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I don't know. Maybe because I already have breaks in my back.

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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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Thanks for your educational input on estrogen. My feelings are to be bold with HRT. Women have been afraid to take it because of the flawed study with nurses 30 years ago. Most doctors are afraid to prescribe it due to the liability. Shamefully, no large studies or research has occurred to eliminate all the confusion re this very critical issue.

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@dianestanley

I don't know. Maybe because I already have breaks in my back.

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@dianestanley I have 7 spinal fractures and am doing Reclast after Tymlos. My docs will not prescribe Prolia unless absolutely necessary. Transition off of Prolia is fraught with risk, apparently. I have been told that if I do Reclast to lock in gains, I might be able to take a med break, with monitoring.

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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 can certainly understand your reluctance to go on hormones or to even consider recommending them since you have had breast cancer. There's still a lot we don't know definitively and the information out there is very confusing. What we do know is that the WHI was a flawed study and that the explanation of results was hyped and misrepresented. What was presented was the "relative risk" (I think it was somewhere around 25%) which made the risk seem quite high when in actuality, the "absolute risk" was determined to be an additional 8-9 people per 10,000, a very small increased risk. Now, any small increase in risk may be too much for some and I recognize and respect that. For those that need to arrest bone loss and are not happy with the other drug options, it's just one more thing to consider along with the risk/benefit ratio as each drug option would have.
Some other things to consider. Those on estrogen alone (only if you have no uterus) actually had a lower risk of breast cancer than those on estrogen and progesterone. There is some consideration that it may actually be the progesterone that increases risk. This needs further exploration.
The hormones used in the WHI study are different from what is generally prescribed today which are likely much safer. They used an oral estrogen, Premarin, created from pregnant mare urine. This formula contained several forms of estrogen, most of which would not be prescribed generally in menopause. Estradiol seems to be the safest in a transdermal patch at a low dose. This option bypasses the liver, unlike oral estrogen which must be processed through the liver.
The WHI study used a synthetic progestin which is now known to cause an increased risk. The safest progesterone available is micronized bioidentical progesterone.
When research studies are completed that suggest altering the course of previously held medical belief and practice, new protocols generally don't become common practice in the medical field for 15-17 years. We may be drastically behind the 8-ball here as many doctors still hold onto the decree of the WHI though there are some who are starting to shift their thinking and their recommendations.
Dr Avrum Bluming, an oncologist who has studied the research on HRT for decades has co-written a book called Estrogen Matters. He has many articles and interviews online that are very informative. Here is an interview that deals with the issue of HRT and breast cancer.
https://www.balance-menopause.com/menopause-library/explaining-what-the-evidence-shows-to-offer-choice-to-women-after-breast-cancer-with-avrum-bluming/
It's a complicated issue, no doubt. I just want to put it out there as an option to explore, research and consider depending upon one's personal situation and comfort level.

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@gretch19

Well said. I am struggling with this very issue. I am 64. If I start with Evenity for a year and successfully build back my bone, can I conceivably treat myself holistically, my preferred next step? No one really talks about this approach to sequencing. All I have been reading is sequencing with more meds. I am willing to try Evenity if I know there is a non-drug solution at the end.

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Do any of you feel, that the right answer to make a decision as to how to treat osteoporosis is so convoluted,it makes your head spin? I just want to wrap my body in shrink wrap, and wait until more studies and research studies are conducted. I will continue to do research, and hopefully insurance companies and big pharma can begin to collaborate research on post menopausal women finally!

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