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.

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@csday

Mayo Clinic Jacksonville gave me names of Mayo alumni in my area and I found a terrific endocrinologist.

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@csday that is so wonderful about getting a Mayo doctor! Who did you contact at the hospital for names?

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@becsbuddy

@csday that is so wonderful about getting a Mayo doctor! Who did you contact at the hospital for names?

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I contacted the Mayo appointment desk first and they directed me to endocrinology department. Since there were no appts open for 6+ months they asked if I would like Mayo alumni in my area. Dr Soares-Welch in Gainesville is marvelous. The first thing she told me after seeing my -4.0 spine score, was “Let’s not talk medication until we can learn why you are losing so much calcium.” A 24 hr urine collection test showed a kidney issue where excessive calcium was being excreted. A change in blood pressure meds was the first step. Next was a consultation on treatment options from most aggressive to least. She talked of the art of medicine - finding the best option to fit each individual without a one size fit all solution.

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@imatine

@kathleen1314 thanks a million for your great help and for all the links and explanations. I will definitely continue to do my research and now thanks to you in a better informed way and with more faith that I made the right choice to stay away from all those meds. I wish you the best of luck and happy new year

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I have been taking Evenity for 7 months with zero side effects.

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How did you find out that both your doctors were consultants for Amgen?

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I would try Forteo or Tymlos first, and save Evenity for later. If you do Tymlos, you can start at a lower dose and move up, which has helped some of us with side effects.

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I am in my 4th month of Forteo. Other than some mild pain issues (and one 6 hour episode) early on, I have had no side effects. I just had an appointment with my Endo and told him I was glad he prescribed Forteo. I would choose Forteo again.

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I`m 66 years old and in good physical shape currently with Osteopenia. I am an avid surfer and diver but currently recovering from a foot surgery. I took a lot of Prednisone through mid teens for severe asthma. I don’t remember doctors telling me or my family the side effects of brittle bones. Some where around age 30 my doctor diagnosed me with severe osteoporosis. I was shocked. Mostly before that age, I had a great number of fractures. I have had 14 fractures including two broken toes. The worst was a spiral tibia fracture. I have done pretty well considering my broken bones and have had serious shoulder problems and lots of inflammation. Three weeks ago I had a significant foot Fusion surgery here at Mayo Clinic in Rochester and going back to Texas Friday. It was a genetic problem called a Navicular Cuboid Tarsal Coaltion. I wanted to comment about Forteo since I had very good experience with it. When my doctor told me and showed me with bone scans how brittle my bones were, It was very bad news. Forteo had just come out at that time. He put together a group of his most severe osteoporosis cases and almost all seniors except me; maybe 35 years ago for a one year trial. I started immediately giving myself an injection on the side of my stomach where you pinch some fat. I did this for 365 days and took it everywhere I went. Even though it was a hassle for sure, it was extremely successful reversing my osteoporosis. It felt like more of a pinch than hurting but did it for a year. I’m very happy with the results and suggest it for anybody that wants to reverse it. I don’t know how other cases compared with my case. My doctor told me at my young age my hips looked like an 80 year old man. All of that freaked me out so I committed immediately and it was very successful. I haven’t checked recently but last I checked I had some osteopenia which is normal for anybody over 60.

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@jeffsurfsalidita

I`m 66 years old and in good physical shape currently with Osteopenia. I am an avid surfer and diver but currently recovering from a foot surgery. I took a lot of Prednisone through mid teens for severe asthma. I don’t remember doctors telling me or my family the side effects of brittle bones. Some where around age 30 my doctor diagnosed me with severe osteoporosis. I was shocked. Mostly before that age, I had a great number of fractures. I have had 14 fractures including two broken toes. The worst was a spiral tibia fracture. I have done pretty well considering my broken bones and have had serious shoulder problems and lots of inflammation. Three weeks ago I had a significant foot Fusion surgery here at Mayo Clinic in Rochester and going back to Texas Friday. It was a genetic problem called a Navicular Cuboid Tarsal Coaltion. I wanted to comment about Forteo since I had very good experience with it. When my doctor told me and showed me with bone scans how brittle my bones were, It was very bad news. Forteo had just come out at that time. He put together a group of his most severe osteoporosis cases and almost all seniors except me; maybe 35 years ago for a one year trial. I started immediately giving myself an injection on the side of my stomach where you pinch some fat. I did this for 365 days and took it everywhere I went. Even though it was a hassle for sure, it was extremely successful reversing my osteoporosis. It felt like more of a pinch than hurting but did it for a year. I’m very happy with the results and suggest it for anybody that wants to reverse it. I don’t know how other cases compared with my case. My doctor told me at my young age my hips looked like an 80 year old man. All of that freaked me out so I committed immediately and it was very successful. I haven’t checked recently but last I checked I had some osteopenia which is normal for anybody over 60.

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@jeffsurfsalidita Wow. You are certainly committed to bettering your health! Osteoporosis is no joke and causes such frustrations and troubles in our lives. I’m struggling with it now due to having to take prednisone for an autoimmune disease that got me 3.5 years ago. Fosamax didn’t work for me so now I’m going to try Reclast. Sure hope i have your success! Was everyone in your group on Forteo and do as well?

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I am one of those women on Prolia. Over 3 years now. 67 years old. Spine improved by 10%. Hip 8%. Was in -3's. Bone density scheduled for late Feb. Only hassle trying to schedule timing of injections if invasive dental procedures required. Can go maximum of 7 months between injections before having to worry about spontaneous vertebral fractures. As someone who does need such dental work, could consider switching to Reclast. Discussion with specialist in Feb. 22. Bottom line...can't leave osteoporosis untreated. I regret waiting as long as I did. Prolia is easy to get, one needle in the arm twice a year.

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@becsbuddy

@jeffsurfsalidita Wow. You are certainly committed to bettering your health! Osteoporosis is no joke and causes such frustrations and troubles in our lives. I’m struggling with it now due to having to take prednisone for an autoimmune disease that got me 3.5 years ago. Fosamax didn’t work for me so now I’m going to try Reclast. Sure hope i have your success! Was everyone in your group on Forteo and do as well?

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Becky, I don’t actually remember how the group did or know if I found out that information. All I know is my very bad situation got much better after doing it. It was a new medication and the results were outstanding for me. It was bothersome doing it every day for a year but I was extremely pleased with my results. I believe I started out with Fosamax. Good luck to you too.

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