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Prolia adverse events over 10 years - ONJ, AFF
I wanted to share a slide from last week’s 2024 World Congress of Osteoporosis where Dr. Serge Ferrari discussed a 10 year look at select adverse events of Prolia versus 3 years of placebo from the Freedom and Freedom Extension studies. The units are in rates per 100 subject years so keep that in mind. I compare the first 3 years of placebo to the 10 years of Prolia (denosumab) to make it easier to read.
Dr. Ferrari mentioned there was a total of 13 cases of ONJ (osteonecrosis of the jaw), all of which healed, and 3 total cases of AFF (atypical femoral fracture) during the 10 years. They calculated that Prolia was reducing 280 fractures for every one AFF.
One takeaway was that even with the reduced bone turnover on Prolia, there was not an increase in the AFF rate over time. This addresses the “brittle bones” comment that you might hear about. Perhaps the bones are “older” but the increased BMD seems to compensate. Bisphosphonates do not continue to increase hip BMD past about 3 to 5 years like Prolia does.
This is just a look at the numbers and in no way am I saying you will not have an adverse event on Prolia. A lot of people on this forum have shared their adverse events on Prolia. I just want to share the data from the studies.
This presentation segment was sponsored by Amgen (maker of Prolia), so keep that in mind too 😊.
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Ive about had it with this poor excuse for happiness ever after. My nephrologist says just take it and dont fret about it.....I wish we could all do something about it legally and publicly to be sure no one else falls into this trap. Compensation wouldnt ever be enough but putting this dratted company out of business forever might satisfy my disgust.
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2 ReactionsI used Prolia for 1 year, with positive results, and no worsening in bone density scan compared to previous scan 2 years prior. Now my Infusion Center has switched to, Jubbonti, released in 2024, as a biosimilar treatment to Prolia. Both are covered by Medicare. I don't want to change, as biosimilar is not a generic, but Northside Infusion Center in Georgia has been changing Prolia to Jubbonti. Anyone else using Jubbonti or being pressured to change from Prolia? Thanks.
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2 Reactions@shani , @gravity3 - You laugh, but there is a possible drug coming called AGA2118 that is really powerful. I'm hoping it's an offramp for Prolia without losing bone density. It's in phase 2 trials now so it's going to be a few years before we find out.
There is also a slim chance for a new oral version of Forteo that is coming that might work. I'm not sure how, but it acts more like Evenity than the injectable version of Forteo. Probably not enough to catch long term Prolia rebound but maybe.
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4 Reactions@pegfor - Funny you should ask, I went through the same routine with being pushed on Jubbonti. It took me over two months to get Prolia re-approved and shipped for my latest injection. Luckily I started the process early. I was still one week late for the injection.
You are right about Jubbonti not being a generic but instead a bio-similar. It should probably be fine, but I did not want to find out. If it makes you feel better, I did learn about Jubbonti and discuss it in the beginning of this presentation.
Please note that I am not a licensed medical professional, and the information presented in the video is for general educational purposes only. The content is shared based on my research and understanding as a patient living with osteoporosis. It is essential to consult a qualified healthcare provider for personal medical advice.
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4 Reactions@pegfor
There are other comments/discussions about Jubbonti. Try going to the top of this page and 🔎. Type in Jubbonti.
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2 ReactionsOh, there is a vague hope in mind for a medication that might possibly be an off ramp for Prolia and that thought isn't supposed to elicit a sardonic snicker.
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3 Reactions@gravity3
Thank you.
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2 Reactions@gently
Thanks. I've seen a couple of comments that about multiple side effects from Jubbonti on this site. May be related to other health issues the person mentioned. I want to stay with Prolua as so far, after 2 injections zero side effects. I'm age 74, in 10 years I'll be 84. So plan to take it 10 years. I've have Osteopina for 11 years total. I took Calcium and D3 5000 during those years. Then 2 years ago, I had surgery in my left arm and Orthopedic Dr told me I had Osteoporosis in my arm. My next bone density scan showed osteoporosis in 2 vertebrae in my lower spine 2.4, and neck bone in hip is 2.2, My spine went from 2.4 to 2.2 after 2 injections. No other signs of worsening. Hoping I can continue Prolia, not biosimilar Jubbonti. But, theyre pushing Jubbonti at me. I live in Georgia USA.
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1 ReactionHi, pegfor. If you are on original Medicare, you can't be required to switch to Jubbonti. If the administering clinic isn't carrying Prolia, you can look for an alternate clinic that does.
You may not have a different reaction to Jubbonti than you experience with Prolia, but some patients do. What are considered minor differences in manufacturing and in excipients can have more than minor difference for patients using the medication.
If you are on Medicare Advantage, the formulary may have changed, covering only the lower priced medication.
You've taken two injections without side effects and that will hopefully remain true. And it is good to have a long term plan. You may have already considered the no exit risk with Prolia. If you need to pause or stop treatment because of dental treatment or the usually longer term risk of necrosis or atypical femur fracture, it becomes more risky the longer you have been on this drug.
You should be able to stay on Prolia.
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1 Reaction@michaellavacot I was told to be careful about taking annuity because it can cause blood clots heart attacks and strokes I'm on the Forteo and all I get is nasty headaches and muscle spasm all the time and I've been on it seven months maybe and I'm hearing that this stuff is like a give-and-take I don't know like it's supposed to build bone but it also could take your bone if you don't do things exactly right now I have an autoimmune I have no thyroid cause I've Graves' disease and I have kidney problems so I had to be careful when I take certain things so you take this for two years but if you don't go on something else it only takes like six weeks to six monthsfor it to break down your bones that's kind of weird. Then you stuck going on something else because you wanna keep whatever you made but then I'm hearing people say that they go for their abundance and they have gotten more negative than positive so I don't know what to be real or what's not to be real I'm just taking my K2 D3 Boron and magnesium glycinate I had to be very careful of calcium so I'm doing my calcium naturally they say to take the collagen into that helps out that's what I'm doing I am taking my forte at night time but I'm not taking any of these other ones when it's done I'm I'm 64 I'm not I'm not doing this I'm more in pain and everything than I was before that quality of life goes down and I don't like it when I can't do stuff but I can't run in everything because I broke both legs from my car put me to a brick wall so but I I'm trying that's for sure I'm not giving up