What percent of people stopping Prolia with out continuing another drug gets spinal fractures?

[Makeshift]

What percent of people stopping Prolia without continuing another drug gets spinal fractures?

[Arcadia10]

From what I've read in the literature, it can be between 4-15%. That was too high for me to risk it, so I'm on Actonel (risedronate) 35mg weekly to discontinue Prolia safely.

[Makeshift in reply to Arcadia10]

Thank you Arcadia10. I agree with you that it would be to risky. I’ve been on it 5 years this dec. and after dexi scan it will be decided if I need Prolia any longer. I want to have knowledge to continue with something should they stop Prolia. I do not trust them any longer to have my interests at heart.

[Arcadia10 in reply to Makeshift]

I was on Prolia for 2 years and had to stop due to lots of side effects. It was only then that I realised the implications of doing so, transitioning off it safely, etc. Something to be aware of is that apparently you lose all the bone density gains made when you stop Prolia, so back to square one, if not worse. My next DEXA is due in March 2021, so I'll find out then if this is so in my case.

[Mark_ABH in reply to Makeshift]

Hi Makeshift, it's very important to start taking something else after you discontinue Prolia to avoid rapid loss of bone density and possibly broken bones. Here's the latest advice from the Endocrine Society (americanbonehealth.org/bone...

Postmenopausal women taking denosumab should not discontinue it without beginning bisphosphonate or other medicine in order to prevent rebound bone turnover and to prevent rapid decrease in bone mineral density and increase in fracture risk.

The guidelines issued last year by the Secondary Fracture Prevention Initiative say the same thing.

I hope your DXA scan shows you have made progress in your treatment. HEre's to your health!

[Makeshift in reply to Mark_ABH]

Thanks Mark_ABH for the important information I can take with me to have at doctor visit if needed.

[Viazoy]

I would LOVE to know. I'm not sure how many experience fractures when stopping Prolia or even when switching to another drug (especially a drug with another mode of action). Amgen must have this info but I'm not privy to it and my guess is that they would not be eager to share it! All I know from my viewpoint of living daily with pain from Prolia-related fractures is a) I'm sorry I ever started it and b) I'm afraid to get off it again until I have something more solid about the protection offered by switching to another drug. I'm still trying to get a better handle on this. .

[Mark_ABH in reply to Viazoy]

There are lots of studies about this, though I don't know if you could extrapolate an all-time total from them. Below is one cited by Osteoporosis Canada ...

osteoporosis.ca/increased-r...

Individuals who had received at least 2 doses of denosumab or placebo, and stopped treatment but remained in the study for at least 7 months after the last dose, were reviewed. In the 1,001 patients who stopped denosumab, the rate of spine fractures increased from 1.2/100 patient-years (while on treatment) to 7.1/100 patient-years, a similar rate to the placebo group. Patient years is a statistical measure used to express the time at risk. 7.1 spine fractures/100 patient-years means that if you followed 100 people for 1 year, on average you would see 7.1 spine fractures. Multiple (more than 1) spine fractures appeared to be more common in the group stopping denosumab than the group stopping placebo (3.4% vs 2.2%). The risk of having multiple (more than 1) spine fractures after stopping denosumab was higher in those people who had already experienced a spine fracture, and also in those who had rapid rates of bone loss. The rates of non-spine fractures were similar in those stopping denosumab and those stopping placebo (2.8% denosumab, 3.8% placebo) (Cummings et al JBMR 2017).

[Viazoy in reply to Mark_ABH]

Thanks Mark. If I could turn back the clock two + years based on what I know now I would have raised the roof when that major university medical center told me they would delay my Prolia appointments because of a staffing change. I hope your information (and this article) will be read by many medical professionals. No one should have to live with what I am living with because of what was essentially a medical clerical error!

[Viazoy]

I do not presume to advise others. I only wish I had never gone near this drug.