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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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@phonso This may be misread in that I was only experiencing the effects of Anastrozole when it comes to joint pain. I have not shown any jaw necrosis problems and I have had a hip replacement and my ortho insists that I take pre treatment antibiotics anyway so I think I am doing all I can. Thanks
Okay, thanks for the update. BTW, I was just at the Santa Fe Bone symposium in New Mexico and the presenter there said rucking is not a good idea when it comes to osteoporosis. I think you would be better off doing some resistance training and balance training to help reduce the risk of falling and fracturing.
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2 Reactions@michaellavacot thank you for your feedback. Her GP is keeping an eye on her. She has been on treatment almost 40 years now. I just worry about her.
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2 ReactionsI am looking for insights regarding Prolia and pain.
I take Prolia for osteoporosis and had my third injection five days ago. Since then, my pelvic and groin pain have increased as has a nerve pain that extends from my groin to my knee. I don't remember having this reaction to earlier shots. I had an x-ray which showed nothing is broken and will have an MRI next week. Meanwhile, I am wondering whether this pain is due to the Prolia injection. If so, what can I do about it? I would be grateful for any insights.
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1 Reaction@whiteswan. I agree. I’ve been on Prolea 8 years, have had 2 spontaneous hip fxs and assorted other fractures, so has it helped?…I’d say NO. I wish I had never started it! I’ve toyed with going off, dentist says NEVER take Prolea, other doc specialists say the same thing so good advice I give to anyone who seeks it is DONT DO IT! Another trick to make drug companies richer than they already are! If it helped is one thing, but it doesn’t.
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3 Reactions@2connie, be sure the MRI is for the femur. Pelvic and groin pain could indicate one of the side effects shani experienced-- atypical femur fracture. X ray often cannot detect fine hairline or stress fracture.
I would tell the tech that you are taking Prolia and looking for ATF.
Sounds like your doctor is well informed.
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3 ReactionsHi @2connie - I have no insight here. I will say that Prolia, like other medications, reduce your risk of fracture but does not eliminate it. Hopefully you did not fracture and it's just a pinched nerve or something. Perhaps do some lower back stretching to ease the nerves that run through your spine down toward your lower extremities. I hope everything works out.
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1 Reaction@michaellavacot
I have been treated for osteoporosis across the last 20+ years starting with oestrogen, then Fosamax, strontium & Prolia from 2014. Prolia was the only drug that increased my bone density. I didn’t have any side effects that were noticeable apart from possible blood pressure spikes after the six monthly injection. At the ten year mark my endocrinologist decided to take me off Prolia. In hindsight this was a bad decision & probably was a result of four of her patients suffering an AFF. I had an Aclasta infusion to supposedly hold the bone density gains but this was not successful. My DEXA after one year showed a 14% loss in the spine & a 12% loss in the hip. I had never been in the osteoporotic range in the hip so was devastated to see this. I was offered Tymlos, Forteo or Evenity (all subsidised by the Australian government). I have chosen Evenity as I believe it may give me greater gains in the hip than Tymlos. Ironically, she is suggesting that I go back on Prolia after twelve months of Evenity. It will be a lifetime drug. I’m 75 & apart from a few fractures ( including a spinal compression after going off Prolia) & needing a knee replacement next year, I am fit & healthy. I’m not really daunted by the thought of staying on Prolia as I didn’t find it a problem. I just wish that I’d never been taken off it.
Sorry for the long post but I thought it important to flag what may be the reality for those thinking of transitioning off Prolia.
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8 Reactions@shani
Are you still on Prolia?
yeeees unfortunately...why, you have a magic new way to get off you are happy to share? ha ha I,m lisening.
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3 Reactions