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Prolia and its side effects.

Osteoporosis & Bone Health | Last Active: 2 days ago | Replies (48)

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@neverretire

After being diagnosed with Celiac Disease in 2019, within a short period of time I was thrown into osteoporosis. It was suggested I start Prolia injections. I started Prolia in December 2021 without any literature or information on the drug (shame on me for not doing my due diligence and relying on my doctor’s request).
It was billed as an infusion when it was merely a shot in the arm and sent on my merry way. When I saw the $6000 price tag and my $300 copay I refused to go back. In April 2023, I fractured my T12 getting into bed. I was then told by a spine doctor that I needed to do something or my life would be further fractures.
So, back on Prolia. The side affects are horrendous with having about 8 on the list. I told my husband I feel like I’m injecting “death.”
What is the answer? I definitely do not want to continue this drug.

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Replies to "After being diagnosed with Celiac Disease in 2019, within a short period of time I was..."

How many injections have you had? With fractures, it is usually recommended to do Forteo, Tymlos or Evenity.

The problem is that there is a rebound with Prolia when stopped, which usually requires Reclast or Fosamax to avoid. I have read and seen on videos that Tymlos and Forteo are not effective after Prolia but I do not know if that is true after, say, just one shot, or if it is true for a long time. It is also possible that Evenity would work, but you would have to find out if it stops any Prolia rebound that you might deal with. Evenity is quite potent in building bones.

What I mean by "rebound" :When Prolia is stopped, bone density goes down and fracture risk goes up unless that rebound is stopped with another drug. Basically the cells that break bone down, the osteoclasts, go dormant on Prolia and when the drug is stopped, they come roaring back- so to speak.

I hope you can find a really good endocrinologist to guide you in this situation. My first fracture was at T12 from a traumatic fall. If you fractured getting into bed, that is concerning. I later fractured from an unwise movement so it is true, fractures beget fractures, You qualified for an "anabolic" bone builder. Prolia is an anti-resorptive, not an anabolic,

Some are transitioning from Prolia safely with Reclast. The multiple fracture rebound effect of Prolia should be monitored for two years with bone markers.
Reclast (zoledonate) has it's own set of hazards, but is the most recommended exit strategy from Prolia. You could alternately take Fosamax (alendronate) . Reclast is a yearly injection, Fosamax a daily pill.
Bone loss six months after the Prolia injection is rapid.
When are you due for another injection?
I agree with your assessment of the drug, and think that you should transition off Prolia. But you can't be shamed for trusting your physician.

Am I understanding correctly that Prolia is a 5 year program and then you can go off of it?

Neverretire, it is too much and hard to digest, but what will you do.
We collect symptoms and would add your eight if you get in a talkative mood.

Severe pain in my spine
UTIs
Headaches
Severe itching arms, chest, back
Constipation
Fracture of T12
High Blood Pressure
Tooth pain with no known cause
Extremely tired
Ulcers in mouth

Hello Ladies - this has been my journey so far, and just needing to VENT!. I have been under the care of an endocrinologist for 10 years because I have a hereditary history of Osteo . Took Fosamax for 5 years and then a break from meds with my T-scores holding. Ended up breaking my wrist last Sept., and Bone density showed my T-scores getting worse.
Dr. said needed to get on something ASAP. My recommended choices were Evenity (monthly injections) or Forteo/Tymlos (daily self admin injections. I chose Evenity and have had 7 injections. Will be getting a Calcium blood test which hopefully shows some improvement. My doctor is recommending that I take Prolia after the Evenity.
I honestly feel our doctors are doing their best, but I don't think there is any one right way about which meds and in what order to take them. Unfortunately there has not been enough long-term research to know with certainty what works best.
I wish everyone a good and safe journey.

Hello @neverretire - I combined you discussion with an existing discussion titled, "Prolia and its side effects." - https://connect.mayoclinic.org/discussion/prolia-and-its-side-effects/ so you could meet other members discussing their side effects and struggles with Prolia.