About to start Prolia: What's your experience?

I am on my 10th dose out of 12 of Evenity. I don't tolerate bisphosphonates and won't take Prolia because of the side effects. Since I was started on Evenity, Tymlos and Forteo are not options. I believe that diet, exercise and supplements are not enough for me to maintain bone density and avoid further fractures. My plan is to begin Evista (raloxifene) which is a SERM (Selective Estrogen Receptor Modulator). It has its own significant side effects. I believe this is the best path for me.

Reclast is an IV infusion given yearly and Prolia is an injection given every 6 months. Both are primarily anti- resorptives.
Prolia, like Evenity is a monoclonal antibody that shows good results and would be my preference at this point. Both are made by the same company, Amgen.
I am halfway through the 12 month course of Evenity and as it is given only for a year, must be followed up with one of those 2 drugs. I can’t take anything oral so those are my options.
I had compression fx’s at thoracic vertebraes last December- (skiing) which healed on their own but revealed I have osteoporosis.
So that’s my backstory- I will see my endocrinologist in August to discuss the follow up.
My understanding is if I don’t continue with a drug to maintain the gains, I lose the new bone and even wind up worse off than before.
I struggled with the decision but at 63 and active, didn’t like the idea of more fractures.
I don’t like taking prescription drugs, especially a new one.
But I read the studies ( I’m an RN) and it seemed a reasonable risk.
I’ll report back after my appointment.

I am being advised to start Reclast or zoledronic acid via infusion once a year to treat osteoporosis (left neck area) and Ostopenia ( 5 or 6 other areas based on bone density test result). I’m concerned about risks and side effects. Any comments would be helpful.

The SERM might be a good plan. Are you using an endocrinologist to monitor this? I saw one last year when my PCP wanted me to consider Fosamax and the endo has a few patients who can't tolerate anti-resorptives seeming to do well on Evista.

@callalloo the two year limit on Forteo has already been lifted.

Evista and other SERMs have serious risks too: blood clots, uterine cancer. @lbmorgan44 is aware of these but I don't want anyone on this forum to think that is a magical answer to our dilemma.

I am not as unhappy with the situation now that I can tolerate a med. Tymlos may also lose the two year limit, but bone growth slows after the first year. Depending on monitoring I can continue, or take Evenity, or, as I have said, try a partial dose of Reclast and hope for breaks, and would have further Tymlos in the wings if needed. We all need a doc with this kind of flexibility.

@asifhassan you might want a second opinion. Is this your PCP's recommendation to medicate, or a specialist. Many docs are not medicating osteopenia. There are many factors to consider. The femur neck is always much worse in my scans. My report says it is not useful to measure changes. I don't know why. I guess I have always thought that arthritis is throwing the DEXA off, but noone has ever told me that. I didn't need to investigate because the rest of my scores were bad, but if I were you, I would.

Keith McCormick, who wrote "The Whole Body Approach to Osteoporosis" might be helpful. I like him because he is not anti-med.

Thanks for the update on Forteo.

I'm putting my hopes on bone strength as a critical parameter and hope to get that tested. In one case in the video below, a young man had BMD T-score of -3.0 but the tests (hopefully accurate) showed good bone strength so he skipped osteoporosis meds. I suspect that I lost a lot of bone density early when I was working all hours in NYC and living on coffee and cigarettes and a hit-or-miss diet of too-rich client dinners and salad lunches. Or worse. Buy I didn't do a DEXA test so don't know. IF bone strength is decent, I'll be less concerned about osteopenia since it's at least been stable over 6+ years so far.

Best possible wishes for all of us having to make decisions without any clear perfect choices.
https://m.youtube.com/watch?v=xwx9JMne3ms

First, I don't know your age but osteopenia is very common.

Second, by "bone strength," are you referring to bone quality versus bone density?

I think most of us are still going by bone density as shown by DEXA scores, despite the imperfections of the test.

If there is bone quality but substantial loss of bone density, are you so sure you have cause to worry less/ And what is the correlation between quality and density for most of us?

I can't speak for others but, in the video, a case is cited of a male with osteoporosis (by BMD) measure) but good bone strength so is not taking drugs . I'd prefer to have both measures be good of course but, if I had to chose, I'd opt for good bone strength over good BMD. I mean the Miami condominium structures had to come down because of loss of integrity in the concrete strength. If density alone were the only variable, they could have patched 'sick' concrete to augment density. That's a metaphor not an exact analogy but makes sense to me.

Insurance policies need to change so that patients can all start with bone-builders like Forteo, Tymlos or Evenity, which improve bone quality. In fact, I have read that Forteo and Tymlos improve bone quality even if there is no change in bone density. (Evenity does have some anti-resorptive properties so may not improve bone quality as much: I really don't know.)

However, if I had testing (which I don't) which showed bone quality was good but bone density was not, I would still want medication. I would think the fracture risk would still be high. Picture the bones like swiss cheese. Even if the solid parts are "quality" there are still big holes!

I just post here because I, like you and others, was afraid of osteoporosis drugs. Then suffered life-changing fractures. People don't realize what can happen in seconds to bring life-long pain and disability.

You posted about one man who didn't take drugs. Do we know what happened to him? I just hope people will consider meds when their DEXA scores show significant loss of bone density. I have not had any tests on bone quality but assume that without adequate density there would be collapse anyway.