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.

@hopeful33250

Hi All: I'd like to jump into this conversation about Pilates and osteoporosis. I've found a Youtube video titled Standing Pilates for Seniors which is quite good. Here is the link, https://www.youtube.com/watch?v=i3PYS_jsA1c&t=1038s

You might want to check it out and see if it might work for you until it feels safe to go back to indoor classes again. I find it quite helpful.

Will youy let me know what you think?

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Thanks, Teresa!

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@hopeful33250

Hi All: I'd like to jump into this conversation about Pilates and osteoporosis. I've found a Youtube video titled Standing Pilates for Seniors which is quite good. Here is the link, https://www.youtube.com/watch?v=i3PYS_jsA1c&t=1038s

You might want to check it out and see if it might work for you until it feels safe to go back to indoor classes again. I find it quite helpful.

Will youy let me know what you think?

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Thanks, @hopeful33250 I just saved the video to my Youtube library and will give it a try. I have trouble doing exercises that are not cardio! I feel like when I'm exercising I have to be burning calories and increasing my heart rate, which this type of exercise really does not do but I realize they do have other value.

I have been trying to push myself to do a posture one recently which is similar in that it does not burn many calories. I generally exercise about an hour a day and during that time I have to meet a calorie goal but I guess when I do this type of lower energy exercise I need to accept that I will have to exercise for longer. I really want to get back to my health club and when I do I plan to do Pilates reformer if I can. My lack of flex in my knees does present a problem often.
JK

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@tsc

I'm going to jump into this discussion as I've been doing Pilates for more than 25 years. I purchased a number of DVDs so I could do it at home and also went to a weekly mat class in town. It stopped with COVID. At the same time we were in shutdown, I was overtaken with symptoms of PMR, an autoimmune disorder, which made all movement painful. Mat work wasn't possible. I managed a daily walk, though. Long story short, a year later, I've been diagnosed, gotten treatment - steroids - no more pain. Just diagnosed with osteoporosis though. In researching exercises for osteoporosis, I was surprised to learn that many of the Pilates exercises that involve SPINAL FLEXION can cause compression fractures of the spine. Lifting the head off the mat, abdominal curls, c curves, rolling like a ball, the saw, the hundreds, the helicopter, etc. with the head off the floor - are all dangerous. Carol Michaels is on YouTube and has excellent workout videos for persons with osteoporosis. I also found the attached folders at the National Osteoporosis Foundation website. I included yoga since so many Pilates exercises are similar. It's good for us to exercise, but we have to be aware that the wrong movements can cause us harm. All the Best and keep moving! tsc

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Thank you for the tips. I have been a yoga girl and quit some of my favorite poses due to osteoporosis. I'll definitely check our your recommendations on exercise videos.

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@contentandwell

Thanks, @hopeful33250 I just saved the video to my Youtube library and will give it a try. I have trouble doing exercises that are not cardio! I feel like when I'm exercising I have to be burning calories and increasing my heart rate, which this type of exercise really does not do but I realize they do have other value.

I have been trying to push myself to do a posture one recently which is similar in that it does not burn many calories. I generally exercise about an hour a day and during that time I have to meet a calorie goal but I guess when I do this type of lower energy exercise I need to accept that I will have to exercise for longer. I really want to get back to my health club and when I do I plan to do Pilates reformer if I can. My lack of flex in my knees does present a problem often.
JK

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Hi @contentandwell,

I understand the frustration of non-aerobic exercise. If you are used to aerobic this kind of movement doesn't seem to be "real exercise." I certainly get that. However, the stretching and the movements are excellent for balance (keeping us from falling) and also excellent for strengthening.

As we age, we do need different things. It is important not to expect perfection from each type of exercise. I can't do all of the exercises because of knee or back issues, but if I have discomfort from some exercise I just wait until it's over and then do the next part of the video.

Would that work for you?

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@tsc

Hi Becky, Sorry to hear your T-scores got worse on the drug. That , too, is a bummer. I've been on prednisone since mid-May so maybe it's too early for it to have thinned my bones, But I had the autoimmune disorder (PMR +GCA, later) a year before diagnosis. For the last year, after my walk in the morning, all I could do was collapse on the couch because of the pain. So far, the prednisone as has been good to me, as good as it can be, I guess. I'll know more as I continue to taper. There is a family history of osteoporosis and also the PMR + GCA, my aunt had it too. And my mother-in-law, believe it or not. I hope the Cell Cept works for you.. It would be nice to hear if anyone was able to get better bone density through medications and exercise while staying on steroids.

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@tsc. My sister was diagnosed with an autoimmune disease several years before me. As soon as she was started on steroids, she also started Fosamax and has had NO problems with osteoporosis! Guess its the luck of where you get diagnosed. Are you on an osteoporosis drug?

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@becsbuddy

@tsc. My sister was diagnosed with an autoimmune disease several years before me. As soon as she was started on steroids, she also started Fosamax and has had NO problems with osteoporosis! Guess its the luck of where you get diagnosed. Are you on an osteoporosis drug?

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Hi becsbuddy, I had the dexascan a few weeks after starting the prednisone and the rheumatologist shortly thereafter put me on the generic Fosamax. I wanted to suggest that you check out Sara Meeks on YouTube. Bob and Brad, physical therapists, have featured her on a couple of podcasts. She is an expert on osteoporosis, works with people who have severe cases, and teaches other PTs about it. She also has osteop. Just google Bob and Brad Sara Meeks osteoporosis. She's very informative. I've done her spinal alignment exercise, which I find helpful after a day of working on the computer. Thank you for everything. TSC

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@tsc

Hi becsbuddy, I had the dexascan a few weeks after starting the prednisone and the rheumatologist shortly thereafter put me on the generic Fosamax. I wanted to suggest that you check out Sara Meeks on YouTube. Bob and Brad, physical therapists, have featured her on a couple of podcasts. She is an expert on osteoporosis, works with people who have severe cases, and teaches other PTs about it. She also has osteop. Just google Bob and Brad Sara Meeks osteoporosis. She's very informative. I've done her spinal alignment exercise, which I find helpful after a day of working on the computer. Thank you for everything. TSC

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Thank you, @tsc, I'm not familiar with Sara Meeks (I've seen Bob and Brad). I will look for her on Youtube.

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@hopeful33250

Hi @contentandwell,

I understand the frustration of non-aerobic exercise. If you are used to aerobic this kind of movement doesn't seem to be "real exercise." I certainly get that. However, the stretching and the movements are excellent for balance (keeping us from falling) and also excellent for strengthening.

As we age, we do need different things. It is important not to expect perfection from each type of exercise. I can't do all of the exercises because of knee or back issues, but if I have discomfort from some exercise I just wait until it's over and then do the next part of the video.

Would that work for you?

Jump to this post

@hopeful33250 When I do a video that's not specific for us older people I often do that. When they are doing something that I can't do I just do something that I can do. Last night I tried a video that I got in an email, not specifically for older people. It was a good workout but there were parts that I either could not do or felt I should not do so I substituted. That works for me.

I just read somewhere yesterday that the exercises where you lift your head and shoulders when lying down are not good if you have osteoporosis. That was one of the exercises that I subbed something else for.
JK

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@contentandwell

@hopeful33250 When I do a video that's not specific for us older people I often do that. When they are doing something that I can't do I just do something that I can do. Last night I tried a video that I got in an email, not specifically for older people. It was a good workout but there were parts that I either could not do or felt I should not do so I substituted. That works for me.

I just read somewhere yesterday that the exercises where you lift your head and shoulders when lying down are not good if you have osteoporosis. That was one of the exercises that I subbed something else for.
JK

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Good ideas, @contentandwell!

Something that I find really interesting is that Conductors (of symphonies, bands, etc.) generally live longer than the average population because they raise their arms continually in their work. Raising your arms is considered healthy!

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@panda17

New here. Has anyone heard about the possibility of Tymlos losing their Black Box warning?

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Drs. took me off Tymlos two weeks ago for all the side effects I was having. What is a Black Box warning? I have never heard of it. Can you explain?

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