Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@sue225

Although Forteo was my doctor's first choice, I did not like the black box warning about osteosarcoma. That definitely factored into my decision to go with Prolia. (history of a variety of different types of cancer in my family including blood and bone cancers.)

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Also just reread the article that@jakedduck sent and noticed that Prolia increased my bone density in both the spine and hip to the same degree as Forteo (11.6% and 6.4%). And you can stay on Prolia for at least 10 years.

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@sue225

Also just reread the article that@jakedduck sent and noticed that Prolia increased my bone density in both the spine and hip to the same degree as Forteo (11.6% and 6.4%). And you can stay on Prolia for at least 10 years.

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@jakedduck1 meant to say

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@suemer

I have severe osteoporosis. I am on my 3rd year of seeing a wellness coach at a local physical therapy place. I started doing an hour twice a week of strength and resistance training. Then I dropped to an hour a week and Medicare will pay for physical therapy for resistance training. So I do an hour with a wellness coach (individual training) and intense. Then 40 minutes with a physical therapist. Not on the same day. After 1 1/2 years with the wellness coach and a year with the physical therapist, it stopped the osteoporosis in my spine but not my hips. I cannot take the Boniva, Fosamax of the world. My only resort now is for Prolia. But my first bone scan was in 1999, the year I turned 50 and my spine scan was -1.44 then. . It took until 2018 to get to -2.5 in my spine. My total left hip was scanned in 2008 at -2.5 and in 2019 it was -3.4. I am still weighing whether I want Prolia at 70 years old.

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Hi Suemer, I am scheduled to go on Tymlos. The studies on this drug are minimal, at best, and the side effects are dangerous. However, with a 4.6 T score and a knee that needs replacement, my choices are limited. I am also seeing a doctor who practices "functional" medicine and prescribing specific types of bone supplements. I am hopeful to take Tymlos for a short period of time. At 72, one fall to my hip and I will not recover. Sometimes, we must have the courage to do what seems unthinkable. I was told by 3 medical people, Prolea will not build bone but will prevent further bone loss. Unfortunately, in my case, I'm beyond prevention. Life is short and I would like to extend me quality as much as possible!🐱

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@curlylocks

Hi Suemer, I am scheduled to go on Tymlos. The studies on this drug are minimal, at best, and the side effects are dangerous. However, with a 4.6 T score and a knee that needs replacement, my choices are limited. I am also seeing a doctor who practices "functional" medicine and prescribing specific types of bone supplements. I am hopeful to take Tymlos for a short period of time. At 72, one fall to my hip and I will not recover. Sometimes, we must have the courage to do what seems unthinkable. I was told by 3 medical people, Prolea will not build bone but will prevent further bone loss. Unfortunately, in my case, I'm beyond prevention. Life is short and I would like to extend me quality as much as possible!🐱

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Hi @curlylocks not sure if you saw my post. I am on Prolia because I didn't like the potential serious side effects of Forteo. I am 64 and after one year my bone density in my hip and spine increased significantly. The endocrinologist who originally wanted me to go on Forteo was very pleased with the results. I had -3 .3 or so in the hip and equally bad number in the spine. So she has me continuing on on Prolia which is convenient in that it is only two injections a year.

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@jakedduck1

Here is an article Re: Forteo
I don’t know anything about it but thought this article was thought provoking.
https://www.womenshealthnetwork.com/community/osteoblast/post/should-you-use-forteo-for-osteoporosis.aspx?
Jake

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Great info, @jakedduck1 It works against the immune system, which right off the bat tells me it is probably not appropriate for me. I don’t need to be less immune than the immunosuppressants already make me. Also, I read recently that when you are on immunosuppressants, you are at greater risk of cancer since your body’s ability to fight cancer off is part of your immune system also. Of course whenever a new drug is prescribed for me I run it by my transplant team to get their input and I am sure they would immediately say a big, resounding NO.
JK

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@contentandwell

Great info, @jakedduck1 It works against the immune system, which right off the bat tells me it is probably not appropriate for me. I don’t need to be less immune than the immunosuppressants already make me. Also, I read recently that when you are on immunosuppressants, you are at greater risk of cancer since your body’s ability to fight cancer off is part of your immune system also. Of course whenever a new drug is prescribed for me I run it by my transplant team to get their input and I am sure they would immediately say a big, resounding NO.
JK

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@contentandwell
Do you have any statistics on how many transplant patients actually get cancer?
Jake

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@sue225

So, I am almost 65 and have been on Prolia for 21 months. My hip score was almost as bad as yours. My fear of a hip fracture and loss of independence (I know someone who never got out of her wheelchair), outweighed my fear of Prolia. (I have posted on this blog before but one more time, my hip score improved by 6.5 % and spine by just under 12% after 1 year.

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I have been on Prolia with very good results T score wise, but fell and fractured my foot in the winter and it took seven months to heal. My doctor is now putting me on Tymlos to build bone before resuming Prolia in the future (Prolia, my doctor told me inhibits healing if you fracture). I have opted for medication as the thought of losing my independence again is very undesirable, although my husband was helpful😊. Good luck in everyone’s journey

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@jakedduck1

Here is an article Re: Forteo
I don’t know anything about it but thought this article was thought provoking.
https://www.womenshealthnetwork.com/community/osteoblast/post/should-you-use-forteo-for-osteoporosis.aspx?
Jake

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Interesting article. I’ve been reading Dr. Browns stuff for over 20 years. Initially I followed her advice, as well as many other alternate advice gurus, regarding more natural ways to stave off osteoporosis. From age 42 to age 64, this all worked to slow down my bone loss. But finally it became clear that something more drastic was necessary. I have started Forteo to hopefully regain some of my bone loss. Unfortunately, no drugs are free of side effects. You always have to weigh the pros and cons for your own unique situation. In reality, even “natural” substances should be used only after understanding their impacts as well. Also, I always take advice from sites that are selling their own alternatives to prescription drugs with “a grain of salt”. They are not without bias ... which is not to say, at all, that they are selling “snake oil” either. Only that we all must do the research to know what is the best for our own situations.

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@sue225

Forteo was my doctor's first choice because the bone density increase is significant and fast. Believe the maximum amount of time to be on it is 18 months.

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The maximum amount of time for Forteo is actually two years.

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@jmanj

Interesting article. I’ve been reading Dr. Browns stuff for over 20 years. Initially I followed her advice, as well as many other alternate advice gurus, regarding more natural ways to stave off osteoporosis. From age 42 to age 64, this all worked to slow down my bone loss. But finally it became clear that something more drastic was necessary. I have started Forteo to hopefully regain some of my bone loss. Unfortunately, no drugs are free of side effects. You always have to weigh the pros and cons for your own unique situation. In reality, even “natural” substances should be used only after understanding their impacts as well. Also, I always take advice from sites that are selling their own alternatives to prescription drugs with “a grain of salt”. They are not without bias ... which is not to say, at all, that they are selling “snake oil” either. Only that we all must do the research to know what is the best for our own situations.

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I stubbornly refused to listen to my doctor's advice for years re taking medication for osteoporosis. I regret doing that. So much unnecessary bone loss.

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