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 | Oct 10, 2022

In reply to @leale "Mine dropped enough that he wants me on the meds. I am going to see what..." + (show)

@leale do you know your scores? I have kept a chart since 2001 and some scores go up and some go down. I go by trends. Also there is a big drop at menopause that eases up. If your scores are bad, by all means, consider meds, but if they are still just over the line you could consider alternatives. D3 should be over 30 according to the Endo organization.

leale | @leale | Oct 10, 2022

In reply to @windyshores "@leale do you know your scores? I have kept a chart since 2001 and some scores..." + (show)

I just had a bone density done which showed bone lost with 15% fracture in 10 years. He may put me on the vitamin D supplement. We need to know what that D level is first. Waiting for results

pp27va | @pp27va | Oct 10, 2022

In reply to @windyshores "I keep a chart of my DEXA's since 2001. I had a steep drop after menopause..." + (show)

I put ankle weights, totaling about 4 lbs, into my fanny pack. I wear this placed in front as I walk. I can feel that my legs are stronger, and assume it is adding to the “weight bearing” aspect of my daily walk.

windyshores | @windyshores | Oct 10, 2022

In reply to @leale "I just had a bone density done which showed bone lost with 15% fracture in 10..." + (show)

@leale I guess you don't have your scores 🙂 Good luck!

ps If you have a portal maybe you can find them....or ask your doc....

leale | @leale | Oct 10, 2022

In reply to @windyshores "@leale I guess you don't have your scores :) Good luck! ps If you have a..." + (show)

Thanks. Will keep you posted

ericsr | @ericsr | Oct 18, 2022

Looking at Evenity being encouraged to do Prolia.

Colleen Young, Connect Director | @colleenyoung | Oct 18, 2022

In reply to @ericsr "Looking at Evenity being encouraged to do Prolia." + (show)

Welcome @ericsr. Can you share a bit more? Why is your doctor encouraging Prolia? What is influencing your giving Evenity a closer look?

ericsr | @ericsr | Oct 18, 2022

Osteoporosis from radiation from prostate cancer 6 years ago thinning hips. Prolia is recommended. I worry about the side effects and the 6 month dosing. Also, I read that Eventity builds bone more than Prolia.

dbk67 | @dbk67 | Oct 19, 2022

I know how you feel. I just took my first injections yesterday. I too felt like if I didn’t do Evenity then nothing would really help me. My spine is the issue-3.6 and rest is about the same. I’m actually in need of back surgery which I can’t have. I feel this is actually a no win solution. Yes the stats say this will increase our bones in 12 months and then we must stay on something to keep them there and if we don’t then what happens? To me a no win. Constant pain and constant worry now about side effects. So My next doctor is pain management. I’ll let you know how it all goes. I think we are all up against such uncertainty in our journey with osteoporosis.

windyshores | @windyshores | Oct 19, 2022

@ericsr and @dbk67 My doc is following a bone builder (Tymlos in my case) with Reclast. He cites the issue with abrupt loss of bone density and increase in fracture risk if Prolia is stopped.

Evenity, Tymlos and Forteo build bone. Tymlos and Forteo build quality bone since resporption is not as affected, and Evenity has less effect on resorption than biphosphonates or Prolia.

My doc will follow a bone builder with Reclast. He is going to try a partial dose (1/4) due to my sensitivities, with lots of hydration and slow infusion. He told me that with monitoring I might be able to take breaks, because unlike Prolia, Reclast stays in the system.

Amgen makes both Evenity and Prolia and their website suggests Prolia after Evenity. Maybe ask your doc about Reclast instead.