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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 is just such a stressful decision I wish the medical profession could provide clearer paths depending on age -dexa scores and lifestyle.
Obviously we have all felt it necessary to do our own research which often leaves us with more worries then answers.
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3 ReactionsYou made a very valid point on how most of us are
Does anyone have any experience with OsteoNature products? Thats Dr McCormick’s line of supplements. Im going to try the collagen.
Thank you soo much for your post! I was also on Tymlos as well for for 20 months recommended by my neurosurgeon With no reactions. I had 5 spinal cracks before Tymlos and he said I would not have another crack and I haven't.. after Tymlos!!My ARNP who recommended tymlos has also recommended Prolia as well and she said I needed to take it right after Tymlos..I haven't and currently working with a great PT/DPT gal on exercises for my back! Important I continued taking ARNP recommended Vitamin D 3 /5000 mcg x 2, 1 K2 helps absorb D3 and 1 b12 1000mcg Take D3 with a fat food! I like that there are other options with no side effects! The challenge appears to be you have to change every 2 yrs to be on another drug! I'm 77! Crazy Many thanks and Very Very Helpful Options! If you take Tymlos make sure you tell your dentist it can affect your jaw! My dentist was aware!
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4 ReactionsHappy you are doing well. I heard tymlos does not effect your jaw. I have some weird dental issues after years of excellent dental health. My endo says the tymlos might help the jaw. I will talk to Dr Mc cormick before starting the tymlos.
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1 Reaction@12christian Tymlos does not affect the jaw (and I have been told it can help with healing of fractures). It seems some dentists are confused about this (my own included).
If you finished Tymlos and are not on anything to follow up, you are at risk of losing your gains. People have posted on this forum regretting not following with another med and my docs and McCormick advise against doing nothing.
My docs do not use Prolia but instead "lock in" gains with Reclast or alendronate.
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5 ReactionsI’ve been on all bone builders to no avail.
Foreto caused severe leg pain, but it stopped a few days after discontinuing daily injections.Prolia caused the same thing but the severe leg cramps continued for months as it stays in your system longer.
All these years after osteoporosis diagnosis , I ate right, took good supplements, exercised & tried all bone builders Each dexascan shows osteoporosis is worse. Dr is sending me to endocrinologist but they can’t see me for 7 months!
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2 ReactionsGet on the cancellation list if you haven't already. I've been known to call every day to see about last minute cancellations.
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2 ReactionsYou might see if you can get a video visit sooner with the endocrinologist. Maybe not the best option, but better than waiting 7 months. I had a video visit with my endocrinologist for that reason - and realized the endocrinologist really wasn’t going to touch me, can’t *feel* osteoporosis.
I think if you did a video visit and the doctor felt your case was more time critical, he or she would work you in for a face to face visit.
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1 ReactionWelcome to Connect @momcatvw. It seems like your situation is somewhat typical except for the long wait for a visit with the endocrinologist. That is quite worrisome to me. Is the medical professional who is referring you a primary care physician, PCP? Since you have already been through recommended treatments without a positive diagnosis of improved bone it seems like there might be an alternative strategy. What if you requested a consultation with the endocrinologist? That is what I did and was admitted immediately. All the testing and documentation was current and available. There was no waiting for testing results or documentation updates.
And congratulations on doing the "right" thing with your exercise and menu selection.
I do have one question for you......and that is about Prolia. Forteo is a bone builder. Prolia is not. I couldn't discern the meaning of the Prolia mention with bone building.
May you be safe, protected, and free from inner and outer harm.
Chris
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