1. < Osteoporosis & Bone Health

Has anyone improved bone density without meds?

Posted by naomid @naomid, Mar 21, 2023

I have a very problematic dental history and will continue to need additional root canals and implants. I also have Sjogren's Syndrome and want to avoid any drugs that cause rheumatic symptoms. Other issues in my health history make all of the meds risky for me. That said, I work out almost daily, lift weights, maintain a healthy diet, take all the recommended supplements, and get most of my calcium nutritionally. My endocrinologist wants me to take an infusion/injectable drug. I dread the side-effects, yet I'm afraid of fracturing, which hasn't happened over the many years I have had osteoporosis. That said, my numbers are getting worse (-3.2 spine, -3.1 hip). I need to do something more than I've been doing, and am at a loss. I need hope and solutions I can be at peace with. Thanks for any comments or suggestions!

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windyshores | @windyshores | Jun 11, 2023
In reply to @cmdw2600 "I called the manufacturer and the representative could not answer the question. She just read what..." + (show)
@cmdw2600

I called the manufacturer and the representative could not answer the question. She just read what I had already found online.

I have attached a photo of what I read. But like someone mentioned, WebMD may not be the best source. My endocrinologist had not heard this before and deferred to my oncologist. My oncologist had advised me to do what the endocrinologist recommended but now he has moved to research and is no longer available to me. I will be seeing someone else in the oncology practice next month.

Cindy

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I wonder if a flexible approach to dosing and timing might help. I have done well with 6-7 out of 8 clicks on the Tymlos pen. And you get the most improvement in the first 6 months of Tymlos, Forteo, Evenity and the risk of osteosarcoma is after 2 years on the warning.

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naomid | @naomid | Jun 11, 2023

Then, what would one take after 2 years? You still have to go on something, right?

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gigi4 | @gigi4 | Jun 11, 2023
In reply to @resort "Could you provide more information about nuts reduce calcium absorption? I am only aware of spinach...." + (show)
@resort

Could you provide more information about nuts reduce calcium absorption? I am only aware of spinach. Thanks a lot!

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Nuts contain oxalates like spinach. Google oxalate foods to see a list. I was unaware of this and asked my doctor about it. She recommended eating oxalate foods away from the time I take my calcium. Sometimes what I do is have a snack to take my calcium supplements if I’m going to have dinner where I’ll be including spinach.

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resort | @resort | Jun 11, 2023
In reply to @gigi4 "Nuts contain oxalates like spinach. Google oxalate foods to see a list. I was unaware of..." + (show)
@gigi4

Nuts contain oxalates like spinach. Google oxalate foods to see a list. I was unaware of this and asked my doctor about it. She recommended eating oxalate foods away from the time I take my calcium. Sometimes what I do is have a snack to take my calcium supplements if I’m going to have dinner where I’ll be including spinach.

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Thanks so much for the advice!

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windyshores | @windyshores | Jun 11, 2023
In reply to @naomid "Then, what would one take after 2 years? You still have to go on something, right?" + (show)
@naomid

Then, what would one take after 2 years? You still have to go on something, right?

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@naomid I was saying maybe you could do 6 months- the most potent- or one year of a bone builder. Yes you have to "lock in gains" but my doc, as well as Dr. McCormick, say at that point we may be able to take a break from meds and monitor. That would be when I would switch to a more holistic approach. I was told one Reclast and then monitor. If tests show it is okay to take a break, great, and I would keep monitoring until meds are again needed. ps sent you a private message

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resort | @resort | Jun 12, 2023
In reply to @cmdw2600 "Like you, I have had breast cancer and now have osteoporosis. Took five Prolia injections over..." + (show)
@cmdw2600

Like you, I have had breast cancer and now have osteoporosis. Took five Prolia injections over two and a half years, but elected to stop because I felt it contributed to significant hair loss.

Started Evista but read a person should not take if they’ve had breast cancer so I stopped that. GI issues so many oral medications are out. I decided to use supplements, an inexpensive vibration platform, diet and exercise. I’ve included collagen powder in this regimen for bones, hair, skin, nails but now have read that collagen is not recommended for breast cancer survivors/patients! Not sure what to believe. I have ceased the collagen but was reluctant to do so as I believed in the benefit.

All so confusing.

Best wishes, Cindy

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According to what I read, collagen is good to help prevent cancer to spread. But the book recommends to use chicken and fish bone broth. I think the author might want to avoid diary products. Collagen might contain heavy metal too. So choose your brand carefully.

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candy209 | @candy209 | Jun 12, 2023
In reply to @windyshores "@naomid I did not know that about radiation. I am very curious about this. Do you..." + (show)
@windyshores

@naomid I did not know that about radiation. I am very curious about this. Do you think it would be good to get a second opinion or even call Radius, the manufacturer of Tymlos?

The black box warning on osteosarcoma was lifted in 2021.
https://www.globenewswire.com/en/news-release/2021/12/23/2357391/31149/en/Radius-Announces-Update-on-TYMLOS-abaloparatide-Label.html

But it still says this: Tymlos should be avoided if patient has had " prior external beam or implant radiation therapy involving the skeleton;" Ugh that must apply to you! What a dilemma!

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I watched a podcast on YouTube from Canada. They were announcing their new standards for testing osteoporosis in 2023. I was shocked to hear that they said if you have it have had cancer you cannot take tymlos or forteo. You have to take evenity. So I asked my doctor if these can stir up cancer and he said yes.
For some reason that is not what they tell us in the US. I know that Canada and the UK tend to be more advanced than us and have higher standards when it comes to meds.
Would love to know if others have heard such news or could ask their doctors about it.

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2 replies
windyshores | @windyshores | Jun 12, 2023
In reply to @candy209 "I watched a podcast on YouTube from Canada. They were announcing their new standards for testing..." + (show)
@candy209

I watched a podcast on YouTube from Canada. They were announcing their new standards for testing osteoporosis in 2023. I was shocked to hear that they said if you have it have had cancer you cannot take tymlos or forteo. You have to take evenity. So I asked my doctor if these can stir up cancer and he said yes.
For some reason that is not what they tell us in the US. I know that Canada and the UK tend to be more advanced than us and have higher standards when it comes to meds.
Would love to know if others have heard such news or could ask their doctors about it.

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@candy209 The black box warning on bone cancer with Forteo and Tymlos has been removed. Maybe the podcast was referring to cancer that has metastasized to bone: in that case I wouldn't do any of the three!

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1 reply
candy209 | @candy209 | Jun 12, 2023
In reply to @windyshores "@candy209 The black box warning on bone cancer with Forteo and Tymlos has been removed. Maybe..." + (show)
@windyshores

@candy209 The black box warning on bone cancer with Forteo and Tymlos has been removed. Maybe the podcast was referring to cancer that has metastasized to bone: in that case I wouldn't do any of the three!

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I’ll pm you in a minute. I’ll try and find the podcast

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leeosteo | @leeosteo | Jun 12, 2023
In reply to @candy209 "I watched a podcast on YouTube from Canada. They were announcing their new standards for testing..." + (show)
@candy209

I watched a podcast on YouTube from Canada. They were announcing their new standards for testing osteoporosis in 2023. I was shocked to hear that they said if you have it have had cancer you cannot take tymlos or forteo. You have to take evenity. So I asked my doctor if these can stir up cancer and he said yes.
For some reason that is not what they tell us in the US. I know that Canada and the UK tend to be more advanced than us and have higher standards when it comes to meds.
Would love to know if others have heard such news or could ask their doctors about it.

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Hi Candy209, could you share the YouTube podcast re cancer and Forteo & Tymlos please. Thanks so much.

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