Prolia discontinuation
Hi, due to an osteoporosis diagnosis, I took two injections of Prolia six months apart and due two side effects, I want to come off of it. I do not want to transition to a bisphosphonate or remain on one. How do I take myself off of Prolia safely? I am not getting a straight answer from my doctor.
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Evenity is in the same class as Prolia, Reclast and many others. I have no choice. The Prolia wasn’t doing great for me. I had a ct and they needed to use steroids because I’m allergic to iodine. The dr should gave known this could be a side effect. I’m very frightened that I can’t take anything.
Evenity, Prolia and Reclast work in very different ways. Evenity inhibits sclerostin. People with naturally low sclerostin have very thick bones and that gave researchers the idea to use it for osteoporosis.
I have read that initially they thought Evenity would only build new bone, the whole year (anabolic). But the P1NP bone marker for anabolic action goes up abruptly and then comes down. At least for the last 6 months, Evenity is anti-resorptive (like Prolia and Reclast but with a different mechanism) but less strong. So yes there is some risk of osteonecrosis but various sources of info (see below) say that it is not as much of a risk as with the other two.
If first 4-6 months are more anabolic, there is always the option to do those months. As another patient with high fracture risk, I did Tymlos and then just 4 months of Evenity. Because I only wanted the anabolic months.
For reference, "Great Bones" by Keith McCormick and Dr. Ben Leder's two videos on You Tube (he is an endo at MGH) are the sources of my information. Dr. Leder, in "Combination and Sequencing Approaches to Osteoporosis" has an excellent graph that shows both the anabolic and anti-resorptive action and timing of those phases on Evenity. That said, my doctor says they don't really understand how Evenity works.
There may be someone who has posted or will post here about having jaw issues on Evenity. I am just responding to the statement that Prolia, Reclast and Evenity are in the same class. Yes they all are anti-resorptives but Evenity is not the whole time and is not as strong an anti-resorptive as the other two. All three have very different mechanisms for bone density growth.
Your endo can explain this and I hope a solution is found for you in this hard position.
I did experience ONJ while on Prolia, after an implant procedure. The implants were removed in I am in the process of healing. I have been on Prolia for 7 years and I'm desperately trying to get off. Because of my jaw issues, I only can switch HRT as an alternative, which is not as strong or as effective in combating rebound effect. My only other choice is to stay on Prolia indefinitely. Plus, I can't prove it, but I believe that I have other side effects from taking prolia, including high blood pressure and high cholesterol. And now I'm on high blood pressure meds because they just discovered a blockage in my left ventricle, which most likely be caused from high blood pressure or sleep apnea (I also have the latter and haven't used my CPAP in years). I'm in a pretty bad position... I am only 70 years old and I thought I would live a longer, but these multiple problems all stemming from Prolia use in my opinion don't seem to end. I also have possibly hyperparathyroidism, which might endocrinologist is in the process of checking. I just started going to her and am in the process of getting blood work to figure out if I have enough markers to have my parathyroid removed. Currently there is only one criteria that's being met so they can't get to the bottom of my problem, I'll be at square one again.
jheieck, high cholesterol is a common side effect of Prolia. High blood pressure is also an often seen side effect.
Hyperparathyroidism is seen in Prolia patients as it is acompensatory reaction during use and can resolve after cessation. The parathyroid is four small glands. You may need only one removed or the issue may resolve when Prolia is completely gone from your system.
Your posts are greatly appreciated.