Prolia treatment for osteoporosis: What is your experience?

The rebound effect from Prolia is a given according to my endocrinologist and science-based articles I've read. One cannot go off of Prolia unless immediately on another drug. Otherwise bone will be shed quickly. It's not clear if one loses more bone than that which was 'saved' by Prolia either. The effect is so strong that some doctors are suggesting that people, as they near a date for discontinuing Prolia, begin taking the next drug before stopping the Prolia.

The irony is that the manufacturer, Amgen, developed a post-Prolia drug, designed to prevent the bone loss (to be the necessary "relay" drug as one cannot just stop Prolia without one) and one study, which I cited on Mayo Connect, said that the drug works best on patients who've taken no prior osteoporosis drugs, second best on people transitting off of bisphosphonates, and...ironically...least well on patients who'd taken Prolia first. And, though it was thought that only bisphosphonates can cause osteonecrosis of the jaw, there are now cases attributed to Prolia.

There might be cases where Prolia is the only option, I guess, but I would never trust it myself. It's also only been in the market just over ten years so there are no truly long-term studies of its safety, but over 100,000 adverse effect reports on FAERS for this drug.

I'm sure that Amgen has some of these answers and can give more information about the guidelines for taking it. I just personally wouldnt take it if there were any other choice because it has a problematic approval history and the FDA is continuing to investigate reports of side effects not listed in the continually-revised package insert warnings.

You can get these spinal fractures if you delay getting your prolia dose for as little as 2 mos. You must get an i n jection every 6-7 months. If you want to stop prolia you MUST transition to another drug (e g. Reclast). The doctor should advise you about this prior to starting Prolia. Amgen does have a warning about this in the insert in the box the injection comes in.

I wish I had avoided taking Prolia. I decided to go off of it after 3 years and went back on Fosamx. Within the first 6 weeks of stopping Prolia I fractured 3 vertebrates, t8, t12, and L1., While taking Fosamax. I am now back on Prolia, but am worried as to what will happen if I have to go off of it after 7-10 years. I’d try other things before Prolia and pay attention to side affects listed.

This article says "as early as eight months" after discontinuing Prolia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5915244/
My doctor didn't mention anything about Prolia side effects, only that I needed to take it to offset side effects of anastrozole that I started taking after completing chemo and radiation. I was already suffering nasty side effects from anastrozole when I got the Prolia injection and got some new side effects. That's when I looked up Prolia side effects and decided against using both of the drugs. I never saw the Prolia box, only the needle. It's been about six months since my one and only Prolia injection. I'm doing what I can to improve my bones with diet and exercise -- and even positive thinking (without it, there wouldn't be a placebo effect). If I get a recurrence of my cancer (which anastrozole is supposed to prevent, though it causes osteoporosis) or if I get spinal fractures, I'll post my experience. If I get run over by a truck, you probably won't be hearing from me. I do not recommend my particular decision to anyone else. If you are younger than me, have fewer age-related illnesses (and on and on), you will need to assess all the risk factors for your situation. Thank you to everyone who participates in the Mayo Clinic Connect conversations. I value your comments.

Usually patients who only have one injection will be just fine. At the osteoporosis clinic I go to at a major teaching hospital in an urban centre, the patients are strongly advised to not go beyond 7 months btwn Prolia injections. Stay well and watch out for those trucks:)

I have been Fosomax and Evenity but do not want to be stuck on Prolia forever. I just began the OsteoStrong program. I am wondering how much k2 and how much boron anyone is taking?

I have good doctors now but I swear that the habit of double-checking everything has paid off. I was once prescribed penicillin by a doctor only three after telling him that I'm allergic to it. A friend was in the hospital with increasing doses of antibiotics to knock out a thriving infection until I called my pharmacist who pointed out the it could not be taken with the milk it was, well, being taken with every morning. My friend's doctor and PA didn't believe it until they double-checked online.

There are inexcusable things like doctors failing to adequately inform patients about drugs' specific protocols and risks and interference with other drugs or even foods that are not uncommon enough in my opinion. As a former president suggested, in reference to a different set of risks, "Trust but verify."

I'm taking a supplement that in theory has the calcium (from algae)! Vitamin D3* and vitamin K2** in balance. It's the one recommended by the owner of an indy vitamin store who's been in business for nearly 50 years and seems to know the good manufacturers that have survived in the competitive vitamin industry.

I'm uncertain about how much boron to take but have to check the label as this vegetarian supplement has trace elements and minerals. So look forward to someone posting about the boron question.

I did recently add a supplement to increase the silica after reading a study (which I cited elsewhere on Mayo Connect) on the importance of orthosilicic acid for bone renewal and health.

*Vitamin D3 may play a role in cancer prevention. I cited and linked a study about that elsewhere on Mayo Connect.

**Vitamin K2 is thought to help steer calcium to bones or (some studies are suggesting, the science is as usual a work in progress) make it more bioavailable for the bone renewal process.

I have osteopenia and am not taking any osteoporosis drugs so am hoping that giving my body anything else that it might use to retain what I currently have will pay off.

Dodge those trucks, we need your insights and wit!

There might be choices other than Prolia that would work. The osteoporosis board has several threads about drugs people have experience with. There are also people on this thread with a lot of knowledge about the panoply of med treatments in the market for osteoporosis. But whatever you consider, please double-check cautions, side effects and any protocol limitations. Since some drug choices can preclude other, later ones. It's almost as if one needs to pre-plan a possible decadesworth treatment plan so as to ensure best future meds. That may change in the future as well though.