Prolia treatment for osteoporosis: What is your experience?

I think most of the people on Mayo Connect are sophisticated enough to know which anecdotal evidence to likely discount and which reported side effects, that they come upon repeatedly, to take seriously. The FDA protocol for requiring that a manufacturer list a new side effect, AFTER a drug has been 'approved', is stunningly slow as molasses. And, again I know this industry, subject to months, if not years, of negotiation. Frequently among people who, in the course of a career, careen back and forth between jobs at the target companies and the Federal government agency regulating them. No one has to check FAERS, but not everyone knows about it, or it's name or the URL so I will continue to mention it. People can assess their own desire to dig deep about proposed meds. The worst thing, in my mind, would be to suffer some really negative side effect from a drug and not have been informed ahead of time that it was a known risk.

OK 😏

I hope that continues to be the case.

Agree 100%!! Staying informed from many sources is so important. Negative or positive I want to hear. I appreciate and thank everyone who takes the time to report their experiences. Also remember, Mayo Connect not only offers their member's posts, but also gives links to Mayo updates and news on ways to live safer and treat osteoporosis whether using medications or not.

I am old enough to remember when the Surgeon General released his report in the 1960s on the deadly consequences of smoking. My boss at the time, a Ph.D. and Professor of Sociology, strolled into work one morning and said, "I've just read the Surgeon General's report, and it scared me so bad I've given up reading." I honor that position. Whatever stance we take, to know or not to know, it's an individual choice. One of my favorite writers, the elegant essayist, famous for his National Book Award winner THE LIVES OF A CELL, was a pathologist, tops in his field. He wrote that he never attempted to diagnose himself and never questioned anything his caregivers prescribed. His physical body was their area of expertise, and he just didn't want to know the details. One of my dear friends, a very bright woman, told me, "I don't want more choices; I want fewer choices!" I honor those who choose to not choose. I often wish I would relieve myself from the stress of choices. But alas! My curiosity always gets the better of me. Some of us are sensitive to very little and others are sensitive to absolutely everything. If worry is what makes you sick, then I support your decision to find the best caregivers available and turn yourself over to them. As for me and those like me, I am so thankful for all the resources now available to help us decide what our bodies and minds most need for health. Sometimes that's a decision to take one drug instead of another, or a vitamin pill instead of a drug, or maybe to find another doctor -- or even just to wait and see.

One possible side effect of Prolia is a rebound effect. After taking it a couple of years, it can cause what it is supposed to prevent. Suddenly all the bones are fragile and fractures abound. Of course, not everyone who takes Prolia has that problem. I've had experience with a rebound effect with another drug, so that one caught my eye. With every drug we decide to take, we are saying, "I'm betting that I'm in the group of people who are not going to suffer any disabling side effects." And with every drug we decide not to take, we are saying, "I'm hoping that I'm in that group of people who are going to do just fine without the drug." Unfortunately, nothing is 100% -- neither good results nor bad results. There is always risk.

I loved the comment about not reading, it sounds like a Groucho Marx line. And The Lives of a Cell was a beautiful book, which made me regret all the science courses I didn't take in college. Reading all these studies now makes me reminds me of the Nick Nolte character in the true-story-based movie, Lorenzo's Oil. He was an Italian economist spending hundreds of hours nightly at the Library of Congress reading medical studies and articles in an attempt to find a possible cure for his son. And having to look up a zillion words and terms just to understand the articles.

He and his wife deserved a Nobel Prize for that cure as far as I'm concerned...the love of two parents who essentially took on current scientific thinking and, with no medical or science, backgrounds saved the lives of future children from the ugly condition that took their son.

The thing about Prolia, which I will never, ever take, that makes me curious is what does it actually do when it's taking back the gains? Clearly bone is being shed, in record time no less, so does Prolia withdrawal, in the absence of a 'protective relay' drug, somehow dissolve bone and flood the bloodstream with calcium? I'm curious about how bone can dissapear so fast. And, is it real, healthy bone or just brittler old bone that would have ordinarily been replaced in a younger body?

I have osteopenia but I dug out an DEXA from 6 years ago to show my new PCP and his comment was, "Hmm. There's hardly any change at all and the hip density is actually better. " At which point he un-recommended any drugs and suggested more calcium-rich foods and tai chi or other exercise that strengthened balance response.

So I think the rate of loss might be under-considered. For those of us who might have list bone early during heavy-coffee consumption, cigarette-smoking student and early career years but have long since discontinued the Young Invincible lifestyle, but are now more health-aware, rate of change could be part of the diagnostic picture?

This article citing this doctor/professor's observations might be helpful. If Evenity (Amgen's drug for people graduating from Prolia) works better for patients who have previously taken no drug, and least well for those who've been on Prolia, what exactly is Prolia best, or good, at?

She cites research that concludes that people are far better off if they'd taken the bisphosphate, alendronic acid before Evenity than Prolia. Buy not as well off if they'd taken neither. And the negative adverse effects for Prolia on the Federal registry exceed 117,000 for a drug that's been in the market a little over 10 years.

I don't know if Amgen has a loser in this drug or it has some clear value no other drug has, and honestly have no opinion. But Amgen planned for this to be THE gotodrug for osteoporosis, after which, because discontinuing the thing starts to destroy bone quickly, everyone would jump to its Evenity option. Et voila, a cash cow duo people could take for decades.

I'm not taking any of these but keeping on eye on them for when/if I do because it seems to require advanced planning so as not to get the sequence wrong, e.g., taking Prolia before taking an Evenity someday.

“When you give romosozumab to previously untreated women, bone formation increases and bone resorption decreases, consistent with the dual effect of this agent,” Felicia Cosman, MD, professor of medicine at Columbia University College of Physicians and Surgeons and co-editor-in-chief of Osteoporosis International, told Healio.

Bone mineral density gains are greatest from romosozumab when given to previously untreated women. When you give romosozumab to people who have been prescribed alendronate or denosumab, the BMD gains are lower compared to the previously untreated woman. However, when romosozumab is given after alendronate, BMD increments in both total hip and spine are significant and substantial. When romosozumab is given after denosumab, BMD increases in the spine and is maintained in the total hip. In both cases, these BMD results are superior to the BMD effect of switching to teriparatide.”

"In the STRUCTURE trial, in which romosozumab was administered after alendronate, mean 1-year BMD gains were 2.9% at the total hip and 9.8% at the lumbar spine. The phase 2 trial in which denosumab (Prolia, Amgen) was administered before romosozumab showed the lowest mean 1-year BMD gains at 0.9% at the total hip and 5.3% at the lumbar spine."
https://www.healio.com/news/endocrinology/20200918/treatment-sequence-influences-romosozumab-effectiveness-in-osteoporosis

Hi @writerbroad — to quote your post above— "Unfortunately, nothing is 100% — neither good results nor bad results. There is always risk." So, so, true about all of these drugs and it will never change because there's no 100% guarantee in life about anything and betting is always risky business! Thanks for your post, I've been away from the group for a couple of weeks and have no idea where to begin to catch up!!