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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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This forum helps so much in realizing osteoporosis decisions are not easy. Evenity is made by Amgen. I had the pre-blood work to start treatment, but I most likely will decline due to my high anxiety of medication side effects.
Good morning......Yea...you got it. Except for the spelling which you might need for researching. Evenity. Regarding the research.....there are results mentioned on the website. The other person who should know about the details is your endocrinologist or another clinician. And finally......I have found the company, Amgen, to be helpful. They have medically trained folks who respond to your type of questions. If they don't have the answers at their fingertips they will go to the research department and get what is available and call you back. Here is the phone # for support at Amgen: 800 772-6436.
I talked to them a few times. Unfortunately, I don't recall the details well enough to pass them on to you. I do know that my endocrinologist told me that none of the side effects affected greater than 10% of the patients. I don't think she would speak untruthfully. I am always afraid I will be in the bottom 10%.
Let me know what you find out. Together we can figure this out. Don't forget you want double-blind tests with placebos.
May you have joy today.......you may have to jump for it.
Chris
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4 ReactionsHello Chris and thank you for the info/phone number. I spoke with a very helpful nurse who provided me with stats and a recommendation. She suggested I look at each drug's prescribing information on their websites, which allows anyone to see what pre-existing conditions would preclude using them. I think that will be very helpful (although I too fear being in the bottom 10%!) Thanks again for the lead.
Hi Becky - I've taken a couple of Pilates classes by accident, hanging around after an aerobic class to see what it was like. It looks easy but it's a workout! I haven't been back since before covid...
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1 ReactionHi expresso409 - thank you for the tip. I did some research into AlgaeCal; found their website but not much outside of it. Is there a site where the general user public shares their experiences? Thanks again!
Well, reality hits. I heard from my doctor shortly after I posted. She said my osteoporosis is actually worse and wants me to see a new endocrinologist. Dang, dang, DANG! Back to square one!
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4 ReactionsIn reply to @chocoholic…. I have done well with Prolia and have no experience with Evenity.
@becsbuddy Oh how frustrating, Becky! Have your parathyroid levels been checked?
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1 ReactionRats! I hate it when things like that happen...2 steps forward, 1 step back. Keep that glass half full Becky!
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1 ReactionI think you are right to be concerned and shouldn't let yourself be backed into a corner. I am 70, just diagnosed with osteoporosis, with a T-score of -3.1. It was kind of shocking because I've walked at least 5 hours a week for the last 25 years, done strength training on a regular basis, until the last year when I got really sick (but managed to keep walking through it). I also was just diagnosed with an autoimmune disorder that requires me to be on prednisone, a bone thinning drug. It will be long term. I have a rheumatologist I trust and a close friend who is an excellent doctor. The rheumatologist prescribed Alendronate and my friend supported that. It has been around for years. My mom took it (as Fosamax). She had bad osteoporosis - with the dowager's hump. She did not get additional fractures. My aunt, who took no drugs, died from spinal fractures. The Alendronate is a once a week dose. I'm going to try to build my bones back better so keep walking and do targeted exercises for the osteoporosis and try to get off the drug. They know enough about it now, that after 5 years on it, a drug holiday is taken. Carol Michaels is a PT and an expert on Osteoporosis. She has videos on You Tube - safe strength and stretching exercises for osteoporosis - with no forward flexion of the spine. By the way, I am not a paid consultant for Alendronate! Wishing you the best.
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