Success with Prolia?

Posted by yanice @yanice, Jan 4, 2023

Due to stomach issues, I have been advised to have intravenous injections to treat my osteoporosis. I am leaning towards Prolia. Does anyone have any success stories? It seems all I hear about are the awful side effects.

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tconz | @tconz | Jan 8, 2023

I have been on Prolia for 6-7 years and have never had an issue. I get the shot every 6 months in my thigh and off I go. Every 2 years they do a bone density test and my spine and hips had been improving. I just had another bone density in December and my hips seemed to be regressing so I see the doctor at the end of this month and not sure what he is going to do.

texasmimi | @texasmimi | Jan 8, 2023

In reply to @pami "I started Prolia 10 months ago. I wondered if you would share how much you improved..." + (show)

-2.8 2018; -2.7 2019; -2.7 2020; -2.6 2021; -2.5 2022
I hope this helps

2121 | @leslie2121 | Jan 8, 2023

In reply to @greyfox914 "I had my first injection of Prolia at the end of August 2022. I had serious..." + (show)

I’m sorry to hear that- my endocrinologist said you could take a Reclast yearly infusion instead.
Also, I read that just one Prolia and switching to another osteoporosis drug doesn’t lead to increased/rebound fractures that can occur. That happens if you stop Prolia and take nothing else.

pami | @pami | Jan 8, 2023

In reply to @texasmimi "-2.8 2018; -2.7 2019; -2.7 2020; -2.6 2021; -2.5 2022 I hope this helps" + (show)

Thank you!

greyfox914 | @greyfox914 | Jan 9, 2023

In reply to @leslie2121 "I’m sorry to hear that- my endocrinologist said you could take a Reclast yearly infusion instead...." + (show)

Thank you leslie2121. I appreciate hearing that. I also appreciate seeing @pami results with Prolia. Some real life positive experiences with this drug are very helpful.

windyshores | @windyshores | Jan 9, 2023

In reply to @greyfox914 "Thank you leslie2121. I appreciate hearing that. I also appreciate seeing @pami results with Prolia. Some..." + (show)

Just want to comment that that rate of improvement, as show by @pami, is not sufficient for those of us with worse scores 🙂 But good for maintenance after bone building meds.

lauriefleitman | @lauriefleitman | Jan 11, 2023

My doctor wants to put me on Evenity but im concerned about the possible cause of stroke. Since I have a PFO ( hole in my heart ) im more concerned. He said if I didn’t want to start Evenity I can go on prolia but it’s not as good. Is there a better treatment than prolia? I was only on fosomax for a month.

fearfracture | @fearfracture | Jan 11, 2023

In reply to @windyshores "Just want to comment that that rate of improvement, as show by @pami, is not sufficient..." + (show)

My lumbar t-scores

July 2019, age 50, -3.9
July 2021, age 52, -3.7
December 2022, age 53, -3.6

I also have Hashimoto's thyroiditis which caused hypothyroidism. Was diagnosed with this in 2017, age 48, and I take 75 mcg of levothyroxine daily for this.

For my osteoporosis, at my endocrinologist's recommendation, I took alendronate from January 2020 to July 2021, and quit taking it because it was causing digestive tract issues. Then my endocrinologist pushed me to have a zoledronic acid infusion, he told me my bones were "horrible" and not knowing what else to do, I had the infusion in November 2021.

After having the infusion, I started doing my own research and discovered that my endocrinologist wasn't doing what he should have done. He hadn't ordered any tests to rule out secondary causes and he had never even looked at my full DEXA reports. All he was basing his decisions on was my DEXA summaries.

When I finally got my hands on my complete DEXA reports from July 2019 and July 2021, I discovered that the "big gain" in my left hip was really a big gain, it appears to be an error in my July 2019 report that made my left hip look worse than it actually was.

My endocrinologist expected me to have another zoledronic acid infusion this past November, but I have put it off. I need to find a doctor who can actually tell me what my bone turnover marker tests mean before I take any more osteoporosis meds. All the reading I have done on this topic is making me think that my hypothyroidism is what is effecting my bones.