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 jessicamc @jessicamc

I have been on Prolia for two years. It took two years for my report to improve to -1.2.

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Are u still on Prolia?

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Profile picture for kristie2 @kristie2

Are u still on Prolia?

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I have an appointment at Mayo to discuss if there is any options to get off of it or take a Prolia holiday. I watched a Dr from Cleveland Clinic on YouTube speak on possible options after one year, two years, and if more than two, probably need to take for life. I think it is one of the best drugs available but it is not perfect. If I can find your question after my October appointment will be happy to share the info.

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Profile picture for jessicamc @jessicamc

I have an appointment at Mayo to discuss if there is any options to get off of it or take a Prolia holiday. I watched a Dr from Cleveland Clinic on YouTube speak on possible options after one year, two years, and if more than two, probably need to take for life. I think it is one of the best drugs available but it is not perfect. If I can find your question after my October appointment will be happy to share the info.

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Thank you. Please share any info.

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Profile picture for gently @gently

@czauderer, the safest transition is Reclast--a bisphsponate. You were only on Prolia for a year, still you have the risk of rebound. I don't blame you for not wanting to transition to a bisphosphonate, but avoiding it could be a worse outcome. And there is a good chance that Reclast wouldn't even be bad.
So what happens you may already know is that while on Prolia the cells that breakdown the bones are held back in the last stages of development. When you stop Prolia all those acid producing cells are released upon your bones. Cascade fractures can result where the vertebra break compress one after the other. Fractured vertebra never heal in the prefracture configuration. You lose height and your spine bends forward. The new configuration is painful even after you heal and leads to other pain as the space where the nerves exit the spine becomes more and more narrow.
Maybe, consider the single injection of Reclast.
Whatever you decide, may you never fracture.

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

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Profile picture for gravity3 @gravity3

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

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I self injected forteo for two years and never had a problem. Then I was put on fosamax but had to go off b/c of high b/p. My doctor said if I ever broke a bone (I have had a few minor falls, tripping over toys, the dog, etc. but luckily have never broken a bone) and my doctor said if I ever did break a bone I'd have to go off the Prolia and she would most likely prescribe Evenity. But the heart related issues scare me away from that direction. Maybe I'll take the old fashion, tried and true fosamax and then take a blood pressure medicine to counter act it.

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Profile picture for Maryann @mkoch

I self injected forteo for two years and never had a problem. Then I was put on fosamax but had to go off b/c of high b/p. My doctor said if I ever broke a bone (I have had a few minor falls, tripping over toys, the dog, etc. but luckily have never broken a bone) and my doctor said if I ever did break a bone I'd have to go off the Prolia and she would most likely prescribe Evenity. But the heart related issues scare me away from that direction. Maybe I'll take the old fashion, tried and true fosamax and then take a blood pressure medicine to counter act it.

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Oh, does Fosamax raise your blood pressure?

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Profile picture for busylady @busylady

Oh, does Fosamax raise your blood pressure?

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Years ago, when I fosamax, it did raise my blood pressure. I would schedule all my annual visits to my various doctors in the summer. First ob/gyn. In the 140s. I thought it was just a blip. Then a few weeks later at my endocrinologist. Same. Then a few weeks with the gastroenterologist. 140s again. So I discussed it with my PCP and he had me come in every 2 weeks just to check my blood pressure. It was consistently high for 6 weeks. He advised me to stop taking it (he wasn't the prescribing doctor) and at my next 2 week follow up I was down to my normal 120/60. When I brought this up to my prescribing doctor (endocrinologist) he said he had never heard of that as a side effect. Well, remember that was back in the day when doctors mainly got their drug information from drug reps who catered to them with lunches and gifts. (Has since been outlawed) Probably drug reps are still the doctors' main source of information on drugs. At any rate, I went on a research binge and found a Canadian study buried deep in the Google woods that stated that the #1 side effect of fosamax was esophageal irritation, and #2 was high blood pressure.

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Profile picture for Maryann @mkoch

Years ago, when I fosamax, it did raise my blood pressure. I would schedule all my annual visits to my various doctors in the summer. First ob/gyn. In the 140s. I thought it was just a blip. Then a few weeks later at my endocrinologist. Same. Then a few weeks with the gastroenterologist. 140s again. So I discussed it with my PCP and he had me come in every 2 weeks just to check my blood pressure. It was consistently high for 6 weeks. He advised me to stop taking it (he wasn't the prescribing doctor) and at my next 2 week follow up I was down to my normal 120/60. When I brought this up to my prescribing doctor (endocrinologist) he said he had never heard of that as a side effect. Well, remember that was back in the day when doctors mainly got their drug information from drug reps who catered to them with lunches and gifts. (Has since been outlawed) Probably drug reps are still the doctors' main source of information on drugs. At any rate, I went on a research binge and found a Canadian study buried deep in the Google woods that stated that the #1 side effect of fosamax was esophageal irritation, and #2 was high blood pressure.

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On Boniva for 2 years. Gastro /mild indigestion. It did nothing to increase bone density. Going natural now.

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Profile picture for jessicamc @jessicamc

I have been on Prolia for two years. It took two years for my report to improve to -1.2.

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

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