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Loss of hearing left ear after 18 doses of Evenity and 2 of Prolia any
Osteoporosis & Bone Health | Last Active: Jul 18 12:27pm | Replies (26)Comment receiving replies
Dear All,
I had 6 months of Evenity, then followed by 6 months of Prolia (one injection) when starting Evenity she my PA (in Madison) never told me I had to follow up with anything. I was shocked but I took it upon her telling me I would lose my bone density 2.5 faster than I would normally after taking Evenity and not following up with Prolia.
After 6 months of Prolia they said now it is OK to have 6 more months of Evenity, and it really helps if I do this before I turn 70 years old it is more effective. So I took 6 more months of Evenity with ended in apx. March of 2025. She NEVER followed up with Prolia at that time... I told her but you said I would loose my bone density 2.5 faster than I would if I did not follow with Prolia. She said she would watch my blood work and keep me posted and I should be OK for a while...
In July of 2026 I had severe back pain, got an Xray and it showed a broken T-12 vertebrae. So I got a second opinion and approval for 6 more doses of Evenity because now I had Severe Osteoporosis and at risk of another fracture. In December of 2025 I had another Vertebra fracture and my T12 is almost gone...my discs have developed the (mushrooming affect) yes and lost 3 inches of height. My spine is like disintegrating. Then in Feb. of 2026 I had to have another injection of Prolia. Soon August of 2026 I have to decide what to do next.
I fear the side effects of another 6 doses of Prolia..The pain has been excruciating. I can't do a Vertebroplasty because the fear is the cement will fracture the Vertebra above it.
Thank you for the detailed information about the Osteonecrosis no one has mentioned that (ENT) yet. I will request the specialized temporal bone CT scan of the bones in my middle ear. I will let you know how the MRI goes.
I just want everyone to know their are risks with these meds and read and get informed then make your decision. And once you start this it is a merry-go-round of meds for pretty much the rest of your life. That they do not tell you.
I also started on AlgaeCal. Thank you for this information greatly appreciate it! Bones1957.
Replies to "Dear All, I had 6 months of Evenity, then followed by 6 months of Prolia (one..."
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@bones1957, It is hard to like your post. Your care has been egregious.
You probably already know this now, but:
Prolia works by preventing the cells that break down bone from the final stage of development. Prolia doesn't cause those cells to self destruct, as Reclast does, instead it allows them to continue to develop and collects them ( in what the literature calls a reservoir) at the final stage. As soon as you stop Prolia they all mature and are released on your bones without restraint. People experience cascade fractures after Prolia one vertebra after another. One drug is proven to stop this onset. It is Reclast.
Evenity after Prolia is a bit of an experiment. In some few, 12 months of Evenity after Prolia have proven effective.
It may have been the missed doses of Evenity that caused the fractures, but I suspect that Prolia to Evenity is a faulty sequence.
You could take the August Prolia, but consider not taking another 6 doses.
I would ask to take Forteo with Prolia given that the prescribing doctor is receptive to new methods of treatment ( and probably owes you). Forteo often helps with the pain of fractures because it accelerates healing. It is also the one osteoporosis drug that is given to help heal osteonecrosis (hoping you don't have that in the ears) Forteo with Prolia yields better increases in bone density, https://pmc.ncbi.nlm.nih.gov/articles/PMC6980341/ but Forteo also build the best bone in the other measures of bone strength.
I would be as eager as you are to get off Prolia. Still, it wasn't starting Prolia that caused the bone loss. It was stopping Prolia.
I think you are in a good position to insist on adding Forteo.
Without regard to whether you choose to stay on Prolia for one or six more injections. You absolutely have to transition to Reclast. And Reclast has it's own set of hazards.
I am so sorry this happened to you.