1. < Osteoporosis & Bone Health

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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windyshores | @windyshores | May 5 8:53am
In reply to @kayabbott "I am 70 and had 3 Reclast infusions over 6 years. The Reclast put me back..." + (show)
@kayabbott

I am 70 and had 3 Reclast infusions over 6 years. The Reclast put me back in osteopenia range, from early osteoporosis. I didn't want to take biphosphonate pills due to side effects, and with the infusion I was just tired for a couple of days. The real risk from osteo is broken bones, and I bike and lot so... I lift weights, take calcium/magnesium citrate (helps absorption). Calcium in vitamins is from the sea in that it is from limestone, which is ocean derived. Vitamin D increases absorption in the GI tract, as does eating the calcium with food.

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@kayabbott I was told to separate calcium and magnesium by two hours because they compete for absorption. So many supplements combine them. It is a pain to wait two hours so I am going to ask again about this.

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1 reply
kayabbott | @kayabbott | May 5 9:51am

I've read that they can decrease absorption if taken together. I don't know if the calcium/magnesium citrate/D pill that I use takes that into account, but my Ca/Mg bloodwork is OK. I also get come Ca from dairy. If extra is not getting absorbed, then it is just excreted rather than causing problems.

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Christine | @thisoldewe | May 5 11:55am

Yes! I agree, insurance companies should do insurance, and stop interfering with medical practice!

As for what drug to take, I am on the other end of some difficulties with adverse reactions.... but the principles of how to go forward remain the same...
1. Do your research
2. Work with your trusted doctor/medical team.
3. If there are complications [due to other medical conditions or reactions] , then add appropriate specialists, and get them to talk to each other.
4. Get their best recommendations to inform YOUR choice.

I find great wisdom in the words of my kindergarten teacher, " You won't know until you try!"
All the best to all who are on this road.

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kristie2 | @kristie2 | May 6 2:29pm
In reply to @windyshores "I am on Medicare Advantage and pay 20% for Evenity. If anyone on regular Medicare gets..." + (show)
@windyshores

I am on Medicare Advantage and pay 20% for Evenity. If anyone on regular Medicare gets Evenity for free, is that through a supplement or drug plan?

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I am also on Medicare Advantage in Nevada and pay $661 for Evenity . I am what’s considered in the donut hole. I also self inject.

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ripley | @ripley | May 6 4:46pm
In reply to @magluchi "I have severe Osteoporosis and this what I’ve learned: Don’t wait too long to make your..." + (show)
@magluchi

I have severe Osteoporosis and this what I’ve learned:
Don’t wait too long to make your decision. Why? Because the solution you choose may not work for you and you’ll have to go onto the next option. That is what happened with me. I started with Tymlos and ended up on Prolia due to side trouble some side effects.

Also, make sure your DEXA scan results are accurate. The DEXA scan I had last year, not at a Mayo facility, was incorrect. Although the radiologist noted a ‘Statistically significant decrease’ on one of my results. No one goes from -4.7 to -0.4 in one year. My PCP did not notice this.
Good luck.

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How did you discover that your DEXA scan was inaccurate?

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susanfalcon52 | @susanfalcon52 | May 7 6:40am
In reply to @windyshores "@kayabbott I was told to separate calcium and magnesium by two hours because they compete for..." + (show)
@windyshores

@kayabbott I was told to separate calcium and magnesium by two hours because they compete for absorption. So many supplements combine them. It is a pain to wait two hours so I am going to ask again about this.

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windyshores,
I would like an answer to this, too. I take Osteo Sustain which combines them.

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windyshores | @windyshores | May 7 7:08am

I am allergic to dairy so am probably more careful on this than other people. I also need the full magnesium dose for my heart. The combo may be just fine for most people.

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