Prolia discontinuation

Posted by czauderer @czauderer, Dec 12, 2024

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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Profile picture for brunobozo @brunobozo

Just got my first infusion of reclast finished with prolia three days ago no
Side effects so far 🙏😊

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Did you prep in any way prior to infusion?

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Profile picture for gravity3 @gravity3

Did you prep in any way prior to infusion?

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Drank a lot of water

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Doctors dont seem to know enough about prolia

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Profile picture for Maryann @mkoch

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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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.

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Profile picture for vic83 @vic83

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.

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Thank you for responding. Since my last post I have experienced skin eruptions around my mouth and bone pain, none of which I had the past 5 years on Prolia. I did more research and found that the half life of denosumab is 26 days, so, it will take almost a month before even 50% of this drug is cleared from my system. I also read that it peaks in 10 days. My last post was before the 10 day mark and that may have factored into the additional side effects I am experiencing. I wonder if Sutter is getting the drug at a phenomenally reduced price as they are using their patients for post marketing statistics, the stage 4 trial of a new drug. Once again, thank you for your response. I am a breast cancer survivor and appreciate the new fact I learned that Prolia has anti-bone tumor properties. That kind of makes me reconsider trying Prolia, again, in 6 months, rather than switching to fosamax.

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Profile picture for Maryann @mkoch

Thank you for responding. Since my last post I have experienced skin eruptions around my mouth and bone pain, none of which I had the past 5 years on Prolia. I did more research and found that the half life of denosumab is 26 days, so, it will take almost a month before even 50% of this drug is cleared from my system. I also read that it peaks in 10 days. My last post was before the 10 day mark and that may have factored into the additional side effects I am experiencing. I wonder if Sutter is getting the drug at a phenomenally reduced price as they are using their patients for post marketing statistics, the stage 4 trial of a new drug. Once again, thank you for your response. I am a breast cancer survivor and appreciate the new fact I learned that Prolia has anti-bone tumor properties. That kind of makes me reconsider trying Prolia, again, in 6 months, rather than switching to fosamax.

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In your case I think it is a really good idea to seek out a specialized Endocrinologist and go by their recommendation. The local place where I do my bone scan had suggested I switch from Prolia to Fosamax because I had been on Prolia 7 years at that time. I asked my Primary Care Doctor, and he said he was not an expert and suggested I see an Endocrinologist, and being a Mayo patient I was able to get a Consult at Mayo. mayo Endocrinologist told me they usually see women with breast cancer, and they have them on Prolia now for 12 years given Prolia anti-bone tumor properties and he recommended I stay on Prolia for another five years since I have lung cancer.
The bio-similars are supposed to be as effective as Prolia, but I don't need to prove it. I stay on Prolia until a real expert tells me to change based on my clinical profile.

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I was on prolia for 5 years. Told I should take a sabbatical because I couldn't stay on it for much longer. I was put on reclast and did terrible. Can I go back on prolia in a year?

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Profile picture for vic83 @vic83

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.

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I have a friend who was recently notified that Jubbonti would be substituted for Prolia. She is requesting that I inquire of those on this forum who your healthcare insurers are. Thank you !

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Profile picture for cmdw2600 @cmdw2600

I have a friend who was recently notified that Jubbonti would be substituted for Prolia. She is requesting that I inquire of those on this forum who your healthcare insurers are. Thank you !

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It is not my insurer that is switching to Jubbonti, it is the providing clinic (Allina). I have original Medicare and Prolia is still covered under Part B.

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Profile picture for vic83 @vic83

It is not my insurer that is switching to Jubbonti, it is the providing clinic (Allina). I have original Medicare and Prolia is still covered under Part B.

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Thank you for clarifying!

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