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Prolia discontinuation

Osteoporosis & Bone Health | Last Active: 6 days ago | Replies (175)

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I have been on Prolia for 5 years. Dexa scans every 2 years has shown that my spine improved to the osteopenia stage but no change in my hips; they are still in the osteoporosis zone. Ten days ago I went in for my scheduled 6 month injection. I live in northern Calif. and we have a health care system in this part of the state called Sutter. Though technically not an HMO, they are starting to act like one. Case in point was when I went for my injection 10 days ago I was told that Sutter has now switched to Jubbonti instead of Prolia for their injections. Both have desonomab as the active ingredient to treat osteoporosis and my endocrinologist told me they are biosimilar though not identical. Usually I am neurotic about researching any medications I take but I was already there, it is hard to reschedule with a specialist in the Sutter system, so I went ahead and had the injection. Immediately I felt a burning in my nose. It did go away in a short amount of time. The next morning I got up and while in the kitchen making coffee I noticed chest pain in my sternum area. Seven years ago I had to have a neulasta shot to boost my white blood cell count and felt a similar pain in my chest (which is expected with neulasta) so I figured the chest pain was from the Jubbonti injection. (I wasn't having tingling down my arm, or sweating, or feeling weak, etc. so there was no way I was going to sit in the ER at the hospital for 8 hours only to be told I wasn't having a heart attack.)
Then, 2 days later, I came down with bladder inflammation (cystitis) and a uti. I never had this problem taking Prolia. After doing my own research, instead of just trusting my doctor, I found that Jubbonti has only been on the market since June 2 of this year, 2025, so less than 3 months. I am angry with my endocrinologist for not disclosing this. Years ago I had a primary care doctor advise me to never take a newly released medicine; don't be part of their post-marketing studies. I have since messaged my doctor that I will not have another Jubbonti injection and if the Sutter organization can't make an exception for me to have Prolia I will find another doctor who can prescribe it. I guess my point in this post is to, first, make the point that Jubbonti is new on the market to treat osteoporosis and available for health care organizations at a less expensive option than Prolia so their may be an economic incentive for prescribing it rather than Prolia. Secondly, I am posting/asking a question because I haven't seen any posts stating that people have had bladder issues on Prolia/desonomab, even though it is listed on the manufacturer's website as a common side effect. I never had that issue on Prolia. Or could it be that the longer one is on desonomab the more prone you are to having this side effect. Before my first injection 5 years ago, the endocrinologist said if you're going to have side effects they usually show up the first year. (That would be after 2 injections.) I'm trying to decide if I'll try Prolia again in 5 months or switch to once a week fosamax. 10 years ago I tried a biphosphonate (fosamax) and they both raised my blood pressure. Has anyone else had that side effect with fosamax or actonel?

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Replies to "I have been on Prolia for 5 years. Dexa scans every 2 years has shown that..."

Have you ever had forteo, tymlos or evenity or just bisphosphonates?

My local clinic also told me that they are switching to biosimilar Jubbonti and not offering Prolia anymore. Since two years ago an Endocrinologist at Mayo told me to stay on Prolia up to 12 years because of its anti-bone tumor properties and I have lung cancer, I have no intention of switching drugs to please my local clinic. I called Medicare and they continue to cover Prolia so there is no benefit for me. They obviously have a financial benefit. It is unethical!
Obviously these new biosimilars do not have the data history of Prolia and I am not going to experiment given my situation. I found a local Endocrinologist who has researched Osteoporosis in women with breast cancer, so I made an appointment with her. I thankfully have original Medicare and can go wherever they take Medicare.