Prolia treatment for osteoporosis: What is your experience?

@danboys agreed about reading the bad things. I'm so lucky to have found this group—there's hope and help and everything in between! Not sure if you saw in another post of mine, I've been on Prolia since 2009, no side effects. Had I not fractured I was praying to get my next injection next month. I'm learning a lot here from others and know the 3 options I might have. Evenity is the one my doc says is my best bet...I'm still on the fence. Black Box Warning...that's serious. And hard to find enough people to make me feel more secure about taking it. All the best to you!

I think the way you fell most people would have had a fracture. I don't know enough about Evening to give you any advice. Trust your gut is what I always say. All the best to you as well. N

Hello @windyshores, you may know from previous posts Reclast was my horror med. However, it's the FIRST drug I ever took for osteoporosis. I'm unsure my reaction to ('my horror drug') was nothing more than a bad match or my body rebelling anything. A first timer on meds for this condition, maybe I should have been advised to take Prolia first, Reclast 2nd to 'lock in' my progress and as my numbers (hopefully go up) add Evenity. Unfortunately the Reclast side effects led me to a year of nothing, my choice.

Having read protocol from experienced people like yourself, and others, I see things differently.
It was backwards—taking Reclast first then Prolia should NOT have been my treatment plan. Evenity was never mentioned in that mix. I'm encouraged hearing that one can "take breaks or stop Prolia" weren't great.ones. I wasn't given that option—Reclast or nothing. I was told by my doc I wasn't a good candidate with other meds I'm on and would disrupt their work.

For many good reasons, I've sought out other consult doctors who suggest alternatives, mine right now: Reclast, then Prolia followed by counts, Evenity or Tymlos, too iffy choice in my case, is where I now stand. Thank you for sharing your wide experiences here, it's made a big difference for me. Still 1 month and 3 consults to decide—praying I choose the right path for us all. I'll never know unless I try something, right?! C

I have been taking Evenity shots for the past four months, My fifth shots are coming up in April! There is one shot in each arm each time. My doctor prescribed being on Evenity for a year, and then being on Prolia for five years. I am 84 years of age, have moderate osteoporosis, and luckily have had no side effects from Evenity! That’s good news so far, and I am grateful for it! I hope others will report similar positive outcomes in the future.

I don't know or remember your DEXA scores. Why are Tymlos and Evenity "iffy"? Just curious...

I've read of really bad unintended consequences from Prolia. I cannot vouch for their truth but also would not wholly dismiss them. My endocrinologist does have some patients on the drug but calls it a 'very serious' drug yet sometimes the only choice for certain patients for various reasons.

With the caveat that we don't know who is reviewing a drug and aren't able to ensure that everything is true, or if a new body ache or such is the result of taking a new drug, one website that has a lot of reviews is askapatient. (All one word, add the dot com part.) Websites allowing these reviews are being litigated out of existence by the pharmaceutical industry and are fewer and fewer every year. So, imperfect as it is, it's good to find it. The FAERS website has patient reports but it's harder to navigate. And the vast majority of negative side effects never get recorded there according to the Wall Street Journal.

If you want to know if your doctor might have a financial incentive for prescribing some drugs other others, the non-profit ProPublica organization has a site tracking which doctors are receiving money from pharmaceutical interests. Search ProPublica's "Dollars for Doctors" page.

To borrow a quote from a former president, I like to 'trust but verify' when the consequences of not doing so can be serious and long-standing. Especially as relates to my health or well-being.

@windyshores and others
Have any of you seen any studies on osteoporosis and genetics? My PCP suspects that genetics are the key factor, after 30 years in practice and looking at his relatives' who developed it early? (He's from a large Vietnamese family who tend to eat the same foods so is ruling out dietary differences.) And I know the common wisdom us that osteoporosis "runs in families" but wonder if science has isolated the genetic markers?

The FAERS website is a Federally-sponsored portal where doctors and patients can list 'adverse effects' to drugs. Prolia has been on the market in the U.S. since 2010. Yet Prolia has over 117,000 adverse effects listed, over 60,000 in one 2-year period. If you enter Prolia in the search bar in the site shown below, and give it time to load, you can read the reports, sorted in myriad ways. In December, 2020, a linked FDA report noted that Prolia is under regulatory investigation for any links to hypersensitivity vascularitis. One study showed that the newer drug by the same manifacturer, Amgen, named Evenity, did not in fact prevent the expected fractures and bone loss caused by discontinuing Prolia. The study was of only one patient but I'd bet a lot that it's the another tip of the iceberg. Speaking of tips of the iceberg, the Wall Street Journal, In an article some years ago, cited the pharmaceutical industry's estimate that fewer than 15% of real, and later-documented, adverse effects ever get reported on FAERS and that public awareness of them more frequently comes from media mention of class-action lawsuits against the manufacturer. I studied this industry in grad school and was told by senior management that the penalty for inadequate due diligence, and testing, for a new drug is cheaper than more-extensive testing and possibly finding another negative side effect. Whether that stance is more venal than good (because it can increase shareholder wealth in the interim) depends upon whose ox is being gored to misuse an old adage. I suspect that any shareholder damaged by an unwarned-against side effect would have preferred a safer drug and lower investment return though.

I promise to hereby step off this soap box in the hopes that consumers refer to FAERS and other public information, at a minimum, when deciding on medicines. Especially new drugs. Especially new drugs that cannot document long-term effective usage. Oh, and on human beings. Preferably within countries with stringent protocols and strict adherence to FDA (or tighter) guidelines.

FDA FAERS reports on adverse drug effects
https://fis.fda.gov/sense/app/95239e26-e0be-42d9-a960-9a5f7f1c25ee/sheet/33a0f68e-845c-48e2-bc81-8141c6aaf772/state/analysis

My osteoporosis is not related to genetics as far as I know so I have not been interested in that issue:)

It is not hard to access side effect lists for Prolia or any medications. But I think too many patients avoid drugs that might help or even save their lives, for fear of side effects. Mainly because they read posts on forums! I am more concerned with sudden fractures upon stopping Prolia, than on side effects. Unless I tried Prolia and has some bad ones!

The FA FAERS site can be truly scary. I looked at it before my COVID vaccine and had a panic attack. I stay away from it!