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Struggling with making an osteoporosis treatment decision
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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I intended a pithy semi-humorous response, not a debate. However, I recently read that although fracture rates are higher with more severe DEXA, the most fractures actually happen with osteopenia.
I fought hard to get on meds and for years could not tolerate any of them until I discovered the slow start with Tymlos.
The only reason I post here is that I want people to know how permanently painful and disabling fractures can be. I don't care if I go bald or spend the day in bed, I am taking Tymlos. I will never be the same after one movement that caused three fractures.
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2 Reactions😏 By the way, I read that too, about the large number of serious fractures that occur among people with osteopenia. That certainly got my attention. One explanation was that the number is larger because there simply are more people with osteopenia than osteoporosis. I would assume that they are younger, more active woman, thus more likely to break bones from sports, etc.
But another study used it to speculate that science isn't adequately evaluating overall bone health in favor of just looking at density. It's way cheaper to measure bone density so DEXA results are still the first-line filters but, as with the perceived density of bones on bisphosphonate-users, can be misleading.
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1 Reaction@callalloo I have not heard about parthyroid cancer risk with meds. I assume Forteo and Tymlos. The black box warning is for bone cancer and there has not been a single case, I believe. Can you share info on parathyroid cancer risk?
parathyroid!
My endocrinologist mentioned a risk of parathyroid cancer risk linked to one of the newer drugs that, in a sense, operate off of the parathyroid system, and I conflated that with the osteosarcoma risk that you correctly mentioned. I apologize for any confusion that I inadvertantly, and dumbly, introduced.
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1 ReactionIf it’s not too intrusive, could I ask which movement caused your fractures?
Picture putting on a bathing suit in a sitting position.
Hi my name is Mary Kay I have osteoporosis and I have broke my right arm 3x and my left arm 1x. Can anyone tell me what is the best treatment for osteoporosis they have me taking an injection everyday for bones. They can’t do anything else with my right arm but give me a complete shoulder replacement and they are really afraid to do that, because of my falling.
I'm sure that a Moderator will welcome you officially and possibly direct you to the best threads. But in the meantime, I just wanted to mention that there are several threads that you might want to read as they address many kinds of questions related to all facets of osteoporosis. You can search "osteoporosis" using the search (magnifying glass) icon in the upper right-hand corner to see a list. In the meantime, welcome!
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2 ReactionsGood evening @katydid51, Welcome to Connect. I'm sorry your falls have been so harmful to your arms. So let's see what is happening. How did you fall in the first place? Did you feel unstable, or miss a step while walking? You indicate that you are giving yourself injections every day. Does that mean that you are taking Forteo, Tymlos or Evenity for your osteoporosis? How was it determined that you have osteoporosis? Did you have a Dexa scan?
On Connect, we believe that by sharing our experiences with each other, we can add to the knowledge we have about our condition or disease. I do have Osteoporosis and have just had my last fall. I tripped over a door stop at the entrance to a dining hall in a local university. There shouldn't have been a loose door stop in the entryway but then maybe I should have been more alert. So.....falls happen.
We also understand that knowledge is power and that by sharing our experiences we have an opportunity to help others. I see that @callalloo has already responded to you and introduced the concept of following threads related to Osteoporosis. There are quite a number of threads for the condition of osteoporosis and the medications being prescribed to control both the building of new bone and then the protection of that new bone.
Before I say Goodnight, I can also share with you that I have had a reverse shoulder replacement after a pretty big fall down a mountain. May I ask what type of specialist told you about needing a similar surgery? Was it an orthopedic surgeon?
May you be free of suffering and the causes of suffering.
Chris
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