Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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

@csday

Any bone building program whether medical or physical takes two years to rebuild bone significantly. See if you can find a clinic that uses Echolight sonogram bone density which measures bone strength as well as bone density. (I found one in Asheville NC)
Better Bones with Dr Susan Brown offers a list of tests to request from your doctor to determine why you are losing bone. My endocrinologist discovered I had a kidney condition that was spilling calcium and a simple medication is treating that. I requested physical therapy sessions and now have an exercise program designed to build bone. Hope these ideas help. To motivate me I have a card by my bed that says “Forteo injections every night or do your exercises?”

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I live in Asheville, so I will try StrengthX. It looks like they also offer some bone building exercise routines and coaching. Thank you so much for sharing that information!

Deborah S.

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@csday

Any bone building program whether medical or physical takes two years to rebuild bone significantly. See if you can find a clinic that uses Echolight sonogram bone density which measures bone strength as well as bone density. (I found one in Asheville NC)
Better Bones with Dr Susan Brown offers a list of tests to request from your doctor to determine why you are losing bone. My endocrinologist discovered I had a kidney condition that was spilling calcium and a simple medication is treating that. I requested physical therapy sessions and now have an exercise program designed to build bone. Hope these ideas help. To motivate me I have a card by my bed that says “Forteo injections every night or do your exercises?”

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It's not so binary for some of us. I have done all the exercise, weightlifting, yoga, running, hiking, and eating healthfully, and still my bones are soft (as reported by the last surgeon who put my ankle bones back together). Exercise AND Forteo is where I am.

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@nancyoinnc

It's not so binary for some of us. I have done all the exercise, weightlifting, yoga, running, hiking, and eating healthfully, and still my bones are soft (as reported by the last surgeon who put my ankle bones back together). Exercise AND Forteo is where I am.

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I don't think its a binary situation either. l And everything that you've done so far, and continue to do, will likely augment Forteo's ability to be effective. To me, that's the most we can do.

I'm hoping that better diet and exercise will me keep osteoporosis at bay, at least for a longer period of time. Also hope they help prevent a #!{* breast cancer recurrence but, since they're the best I can do and aren't onerous, I'm tossing them into the endeavor to stay healthy for as long as possible. The interesting thing is that, doing what that I can that also doesn't entail some overly-absorbing (yet alone goofy or obsessive or radical) life change has made forgetting about cancer and other health worries possible! That surprises me! And is a welcome surprise at that.

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@callalloo

I don't think its a binary situation either. l And everything that you've done so far, and continue to do, will likely augment Forteo's ability to be effective. To me, that's the most we can do.

I'm hoping that better diet and exercise will me keep osteoporosis at bay, at least for a longer period of time. Also hope they help prevent a #!{* breast cancer recurrence but, since they're the best I can do and aren't onerous, I'm tossing them into the endeavor to stay healthy for as long as possible. The interesting thing is that, doing what that I can that also doesn't entail some overly-absorbing (yet alone goofy or obsessive or radical) life change has made forgetting about cancer and other health worries possible! That surprises me! And is a welcome surprise at that.

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Does anyone have any experience with the outfit “Osteo Strong?”. I have 2 artificial hips, and an artificial shoulder from arthritis. I am taking an older drug, Evista, (raloxifene ) for osteoporosis. Have heard about the program but would like some info from a user with artificial joints. Thank you all!

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@pp27va

Does anyone have any experience with the outfit “Osteo Strong?”. I have 2 artificial hips, and an artificial shoulder from arthritis. I am taking an older drug, Evista, (raloxifene ) for osteoporosis. Have heard about the program but would like some info from a user with artificial joints. Thank you all!

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Hi @pp27va - There is another discussion where members have posted experiences with OsteoStrong. You might want to read through it for more information.

-- Anyone had experience with OsteoStrong, who is not a franchisee?: https://connect.mayoclinic.org/discussion/osteostrong/

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@pp27va

Does anyone have any experience with the outfit “Osteo Strong?”. I have 2 artificial hips, and an artificial shoulder from arthritis. I am taking an older drug, Evista, (raloxifene ) for osteoporosis. Have heard about the program but would like some info from a user with artificial joints. Thank you all!

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I am interested in the safety and efficacy of Osteo Strong program on those with osteoporosis AND joint replacements.
Thank you for your reply

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@windyshores

And I guess there is no known absolutely fracture-safe period without medications!

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There is also no absolute fracture-safe period with medication, either. Just sayin'

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i have had a 3.2 test result i have a fracture t12 is there any help for us i am on Forteo?????wsa in great shape before i feel helpless now!!

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I am so scared to take bone meds! Trying to figure it out .71 yrs old with severe osteoporosis . This year I have had several compression fractures and I a great deal of spine pain from l. And r fractures . Wearing a brace hoping they will heal . As soon as I feel better I get another fracture from doing simple housework . Recomrnd Tymlos but all reviews seem so scary . Any feedback on this?

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@autumnanna

I am so scared to take bone meds! Trying to figure it out .71 yrs old with severe osteoporosis . This year I have had several compression fractures and I a great deal of spine pain from l. And r fractures . Wearing a brace hoping they will heal . As soon as I feel better I get another fracture from doing simple housework . Recomrnd Tymlos but all reviews seem so scary . Any feedback on this?

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Good evening @autumnannam. Welcome to Connect. I am glad to make your acquaintance even though it would be nice to see you in person. I can assure you that my two years on Tymlos was beneficial for my osteoporosis and I never had any side effect nor did I experience any pain or discomfort. If you would like to talk with the folks who manufacture Tymlos. There are medical professionals available to help you with questions or worries.

I am in Rochester now for my balance and stability exercises also to help with bone health. Here is the Tymlos phone number for "Together with Tymlos" to see if you qualify for financial assistance. 866 896-5674.
https://www.tymlos.com is the current website.
"Medical News" also published a pretty thorough article on Tymlos at
https://www.medicalnewstoday.com/articles/tymlos#about.
It includes clinical study results and other helpful information.

When you say that your osteoporosis is severe.......what exactly does that mean?

May you be free of suffering and the causes of suffering.
Chris

May you

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