Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Did your doc say why Prolia was okay after being on Fosamax for a long time? I am curious. They both affect resorption, they both may affect dental issues and atypical fratcures after long term use. Do the years on Prolia and a biphosphonate get added together in terms of risks or are they separate?
But you cannot stop Prolia without losing gains. Reclast stays in the system longer and you can even take breaks.
I asked the question about additive risks when Prolia is taken after years on Fosamax. I will ask my doc.
-
Like -
Helpful -
Hug
1 ReactionReferred to Connect by a friend b/c I have questions about osteoporosis treatment and also ongoing lupus issues
-
Like -
Helpful -
Hug
1 ReactionHi @ivysmom, Did you happen to see the reply to your previous post by @loribmt? -- https://connect.mayoclinic.org/comment/707564/
I was wondering if you got all of your questions answered?
-
Like -
Helpful -
Hug
1 ReactionYes, thank you
but the "gains" from biosphonates is simply the retention of old bone that grows weaker and weaker over time...which is what causes all of those spontaneous femur fractions and jaw necrosis after 3 or more years on those drugs.
-
Like -
Helpful -
Hug
1 ReactionYes, I posted this on the last page:
"Did your doc say why Prolia was okay after being on Fosamax for a long time? I am curious. They both affect resorption, they both may affect dental issues and atypical fratcures after long term use."
We were discussing medications that are used to follow anabolics (and that anabolics should be used first, since they build quality bone).
I was saying that my doc thinks Reclast is a better follow up than Prolia because it stays in the system longer so there is not the sudden drop off in bone density when stopped. My doc says, therefore, that after Tymlos, Reclast would be better than Prolia because I might be able to take breaks and try more natural methods as long as I am monitored.
It helps to read the whole recent part of the thread!
Not necessarily 'after 3 or more years' either. I asked both my PCP and endocrinologist how long one can 'safely' take an anti-resorptive bisphosphonate or Prolia before being at risk for osteonecrosis of the jaw (aka dead jaw bone) and they both answered, 'we don't know.' One study that put participants, who'd taken no previous drugs for osteoporosis, on zolendronic acid, lost one participant to ostenecrosis of the jaw within the first 12 months. That seems to be a rare outcome but the point is that there is no known absolutely osteonecrosis-safe period for these drugs.
And I guess there is no known absolutely fracture-safe period without medications!
I'm not debating that. My point was that the treatment choices for osteoporosis are far from perfect and there are other approaches being currently explored to keep bones healthy that seem to show promise. And may yield far better treatment options. Until then the risks of drug-induced cancer of the parathyroid or osteonecrosis or DVTs are among the known adverse effects that patients need to consider and ask their physicians about how to design a treatment plan. Science still cannot explain why one drug can help lumbar spine vertebrae slow shedding of old bone but not hip and femur while another drug does the exact opposite. Or the exact mechanism by which bisphosphonates actually cause longitudinal femur fractures. But current research may provide better choices in the future and that is hopeful.