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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@windyshores

@whiteswan Reclast is an infusion. Evenity is an injection of two shots. Just to clarify for others.

Noone should take me as an example just yet. I do a low dose Reclast because of studies on afib and Reclast (I have afib) and kidney issues (GFR of 36). My doctor came up with the idea, not me. And low doses are taken more frequently, like every 3 months, though CTX testing to see if turnover is suppressed can delay them.

I have been told by MD and infusion nurse that doses of 22 mg (Full dose if 5mg) are not uncommon. I have been getting 1mg over an hours time.

I don't think you can get a dose as low as 0.5mg.

If you already have jaw necrosis (so sorry!), is any amount of Reclast safe? What does your endo say? Can you do Evenity which is a milder anti-resorptive? To help with rebound you might need a full dose of Reclast, who knows, but maybe docs will consider low dose every few months for a year, with monitoring to minimize dosage and frequency, as well as to monitor rebound, due to your jaw situation.

Tymlos would be great but I have read and been told that it is not effective right after Prolia, nor is Forteo. (See "Great Bones" by McCormick or Leder's videos on Youtube).

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Thank you very much Gently and Windyshores.
Windyshores, problem is in my doc. She does not KNOW how to order 1 mg Reclast, Code for 1 mg Reclast is Code J3489: Represents "Injection, zoledronic acid, 1mg , she told me that Medicare does not allow to do Reclast 1 mg 4 times a year. And I told her that on Mayo clinic forum from North , Boston and others patients receive this dose 4 times a year. I could not find anywhere what needs to ad to the code j3489. I will try again to speak with Medicare but last time a woman told me that it is prohibited and she will lose her job if she tells me code. I wanted to write 2.5 mg Reclast, not 0.5 mg, for half of year a dosage will be., to protect me for half of year. And my doc told me that it looks so way that PROLIA again for me only one choice. I am 77, do not think that I could live more that 3-5 years, but I do not want Prolia again. Now I know that if you miss a shot of Prolia -fracture! Life is so unpredictable, I have a lonely sister in another country, she has no anybody, only me. What is in the Future?
And if I can tolerate 2.5 mg Reclast-half of dosage than may be to do next for my own money, but here they told me that I can not pay my own money for Reclast. I do not know-- may be there are lawyers for medical problems? And I do not have problems with jaw, problem is that Prolia does not work after 10 years, doc told me and it was the truth -on my density.
I will study Evenity, because only one month of alendronate helped me to reduce CTX, may be Evenity will help in some way.
Girls, God bless you and grant you good health.
Thanks a lot.

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@whiteswan

Thank you very much Gently and Windyshores.
Windyshores, problem is in my doc. She does not KNOW how to order 1 mg Reclast, Code for 1 mg Reclast is Code J3489: Represents "Injection, zoledronic acid, 1mg , she told me that Medicare does not allow to do Reclast 1 mg 4 times a year. And I told her that on Mayo clinic forum from North , Boston and others patients receive this dose 4 times a year. I could not find anywhere what needs to ad to the code j3489. I will try again to speak with Medicare but last time a woman told me that it is prohibited and she will lose her job if she tells me code. I wanted to write 2.5 mg Reclast, not 0.5 mg, for half of year a dosage will be., to protect me for half of year. And my doc told me that it looks so way that PROLIA again for me only one choice. I am 77, do not think that I could live more that 3-5 years, but I do not want Prolia again. Now I know that if you miss a shot of Prolia -fracture! Life is so unpredictable, I have a lonely sister in another country, she has no anybody, only me. What is in the Future?
And if I can tolerate 2.5 mg Reclast-half of dosage than may be to do next for my own money, but here they told me that I can not pay my own money for Reclast. I do not know-- may be there are lawyers for medical problems? And I do not have problems with jaw, problem is that Prolia does not work after 10 years, doc told me and it was the truth -on my density.
I will study Evenity, because only one month of alendronate helped me to reduce CTX, may be Evenity will help in some way.
Girls, God bless you and grant you good health.
Thanks a lot.

Jump to this post

A 1mg dose is unusual. You might get a 2.5 mg Reclast infusion if your doctor authorizes it as medically necessary. Evenity is an option too, perhaps, but ask your doctor.

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