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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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Sorry did not see your post Migizii
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I too have BD -3.2, my Dr. immediately put me on Prolio, no Issues but will have to take forever - if I come off - big problems - will have fractures for sure - have read many who have stopped and that was their issue!
I have been on Prolia for a few years - I felt similar feelings going on it - so much negative press. Not much change with my bone density scans over the years, but my doctor said at least I was not losing. This last one showed an increase of 6% in my spine. I have no side effects that I am aware of, so I am fortunate. I will gladly continue.
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2 ReactionsHi Heyhey -- I am now in a similar predicament. I've been on Alendronate for many years, and my Dexa is now telling me I need something more. My PCP immediately recommended Prolia because I haven't had a fracture. I read about its negatives and wanted to explore other options. I met with an osteo doctor who recommend Evenista followed by Prolia. I read even worse info about Evenista. Back to my PCP, he was surprised by their recommendation and suggested only the Prolia. I've read horror stories about both meds, but have been encouraged by the good results I've read here. So right now I'm frozen in decision-making. Help? Also, no one has mentioned their out-of-pocket costs for Evenista, which I think can be significant. Has anyone had sticker shock for it or for for Prolia? I am 66 years old, on/and/off with exercise. Thank you in advance for anything!
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1 ReactionGood evening, @chocoholic, Welcome to Connect. Sorry that you find yourself on a familiar sticky wicket.....making a decision to combat osteoporosis. I am having a bit of a problem because Evenista can't be found after searching. in all my known places. Do you think there is a possibility that you mean Evenity?
Evenity, to my knowledge, is the newest medication that not only builds bone, it also protects the new bone that has been created......just like bisphosphonates. Perhaps it is so new that it hasn't yet shown up in a search. Do you know what company manufacturers it?
I have recently finished 2 years of Tymlos. There were no real side effects after the first week or so when I had a bit of a nervous tummy. Because I am highly allergic to bisphosphonates, my only choice at this time was Prolia. I will have my second injection this fall. So far, I have had no problems or side effects of any kind. The scans will show how well the new bone is being protected.
There are quite a few discussions about osteoporosis on Connect. Just type the word "osteoporosis" in the search bar at the top of this page and click on the magnifying glass.
Our mission here at Connect is to improve the quality of life for every member.. Our mentors have been selected for their compassion for others and their experiences with similar conditions and/or medications. Many of us have been at the same decision-making point. We are all living longer these days and want to be as healthy as possible to enjoy our families, friends, and activities.
What activities are you looking forward to participating in at this point?
May you be safe and protected from inner and outer harm.
Chris
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1 ReactionHello Chris and thank you for responding. I did mean Eventity! Apologies for the confusion and for your wasted time in my error. Eventity has been around for only 2-3 years, requires 2 injections/month for 1 year. Heart problems come up as a possible side effect. I don’t know who manufactures it. I appreciate your sharing your experience with Prolia so far; have read some horror stories about it. As for activities to participate in, not sure what that means. What I have been seeking is some way to know the % of folks like you that have/had a good experience with (Eventity or) Prolia and the % who have sworn off after one injection. Or just info on the latter group would be helpful. Any ideas about where to find the numbers? Thx again for your response.
Do your research on another route. I switched to AlgaeCal. Waiting for my next DEXA in October to see if it has worked. But I like all that I have read.
Hi Heyhey, we all sympathize w/ the decisions you’re trying to make. Everyone on the site has struggled w/ making them and I’m exactly where you are, struggling to make one. I’m currently 66 and refused treatment several years ago because I didn’t want to face the side effects and my scores are so much worse now. Everyone of these drugs carries its own set of potentially ugly risks/side effects. It’s mental torture deciding if the one you’re choosing will be less harmful to you than another, I’m with you..so are all of us. While I can’t speak to making a decision about Evinity because it was excluded for me because I have significant heart disease, 2 stents and had a minor stroke, I’m still struggling w/ choosing between injectables or infusions. I think all any of us can do is gain the best information we can, w/o driving ourselves crazy, then pray for our best outcome possible. Check Facebook for Evinity Support Groups if you choose this drug. I never joined FB until I had to begin choosing one of these drugs..it helps. So does the Natural Osteoporosis Support Group. I’m going to do both in tandem. I can use all the help I can get! Best of luck. Toni. Keep us posted…
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1 ReactionIve also been wondering about my osteoporosis and if anything is working. I had a repeat DEXA scan on Monday and got the results back, but haven’t talked to my doctor yet. From what i can tell, my bones are better than they were! If that’s really the case, I’ll stick with the Fosamax I’ve been taking. Then I looked it up and Mayo Clinic agrees with me
https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
I also went for a trial class of Pilates which consists of strengthening answers resistance exercises. Everything i read says to do those types of exercises. So, we’ll see
Has anyone else taken Pilates?
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