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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@dawnranagan

I recently hear a talk that the doctor said 3-5 years max

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There are many opinions, but I like facts when I make decisions. Especially regarding my medical care. My bone density scans continue to show that I have osteopenia and good T scores. I haven't experienced any fractures and have a very active lifestyle, including Pilates several times a week. I will see what medical evidence my new doctore presents and go from there.

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@jheieck

No, I have not found an alternative yet. I switched from nurse practitioner/bone specialist to an endocrinologist due to elevated parathyroid and calcium levels in my blood. The bone health specialist was going to switch me to HRT, Evista, to transition off Prolia, as its my only viable option due to the fact that I developed ONJ last year during an implant procedure which had to be reversed. I cannot take what you are taking because of that. Waiting to see if my osteoporosis is related to parathyroid tumors and once that's eliminated or confirmed, we can start to figure out what I can transition to in place of Prolia. But for now I am in limbo. I have been on Prolia almost 7 years and I believe I have other side effects from taking Prolia, including high blood pressure and high cholesterol and severe lower back aches, but I can't prove any of it conclusively. I want to get off Prolia but I don't know if and when I will be able to do that. In the meantime my tooth problem also is unresolved.

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Had you stopped taking your prolia before the implants? I have been off of Prolia for a year and have had bone graft and scheduled for 2 implants on February 11th. I am worried about ONJ.

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You should be okay but I'm not a doctor. I did not go off Prolia. I had bone graft about 3 months after my shot. And then I had my implants subsequently after I healed, also about 4 months after my last shot. I was told I needed to wait another month and it might have worked, but now I have to start all over again cuz I'm taking Prolia still.

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izard1
saw my Dr. on the 29th and no longer taken prolia. Although will be taking Fosamax. Use to take it long time ago. Had my first one Sat. Not sure how this is going to work. I think I'm just pleasing the Dr. Arthritis is my worst enemy. And I know I should eat better. But at my age I would rather eat what I like go out happy. I will be 96 on the 19th of this month

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Well, ladies, I have begun my journey off of Prolia. After a really helpful consultation with Mayo in Rochester in January, and their reassurance that they have transitioned a variety of women off of Prolia, I decided to go on Alendronate for 3 months. My CTX before alendronate was at 145 at the 6 month and 16th day following the 5th injection of Prolia. In 3 months I will have another CTX. test. Based on that number my team will decide the next step. You all may be aware that Zoledronic acid requires a certain amount of bone turnover to be effective. My hope and prayer is that I am one of those who can tolerate the medications well and will have no more VFs. My decision was aided by being able to have a great discussion about the research I had studied along with their expert explanation about following this course of action for 3 month. Reclast can be administered after alendronate should my numbers significantly rise ( I am hoping not). As all of you know NONE of this is easy. I just finished my first month of Alendronate. I will keep you posted.

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@awesomemomx2

Well, ladies, I have begun my journey off of Prolia. After a really helpful consultation with Mayo in Rochester in January, and their reassurance that they have transitioned a variety of women off of Prolia, I decided to go on Alendronate for 3 months. My CTX before alendronate was at 145 at the 6 month and 16th day following the 5th injection of Prolia. In 3 months I will have another CTX. test. Based on that number my team will decide the next step. You all may be aware that Zoledronic acid requires a certain amount of bone turnover to be effective. My hope and prayer is that I am one of those who can tolerate the medications well and will have no more VFs. My decision was aided by being able to have a great discussion about the research I had studied along with their expert explanation about following this course of action for 3 month. Reclast can be administered after alendronate should my numbers significantly rise ( I am hoping not). As all of you know NONE of this is easy. I just finished my first month of Alendronate. I will keep you posted.

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Thank you for posting an update about your situation and follow-up treatment decision after Prolia. A couple of questions:
1. Did you ever find out whether or not your spinal fractures occurred during Prolia treatment and did this information inform your consideration about how to proceed.
2. Was there any discussion about how high your CTX might rise (if it does increase) before Reclast should be considered?

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To answer #1 – No, I was not really able to get a definitive answer. From the x-rays and MRI I had done for other reason it appeared that they were not acute. In answer to #2 -No specific number was discussed but from the literature I have read, my thoughts are if it is over 200 I would like to have the infusion of Zoledronate acid . In the Grassi et.al 2024 study ( Zoledronate After Denosumab Discontinuation: Is Repeated Administrations More Effective Than Single Infusion?) the CTX marker of as low as 212 at the 6 month marker was a predictor of possible BMD loss. I am hoping it stays low with the Alendronate, diet, exercise, and stress management I have been doing. I am in a wait and see mode.
As a side bar there was mention that once getting past all this that an anabolic treatment might be on the table. I have been trying to find research to see about the effectiveness of an anabolic after an antiresportive and have not found any info about this sequence‘s level of effectiveness. Is anyone else aware of any? I know the first approach of choice is the anabolic and then the antiresportive.

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@gently

@jheieck Recent UK data (2020) concerning over 2500 patients over 45 years of age, investigated patients receiving Prolia “on-time” (at 6 months after their last injection), after a “short-delay” (1-4 months later receiving their Prolia) and those with a “prolonged-delay” (4-6 months later receiving Prolia). It was found that there were 27 fractures per thousand patients in the on time group, 32/1000 in the short delay group and 42/1000 in the prolonged delay group. This clearly demonstrates that the Prolia injection should not be unduly delayed after extractions as the likelihood of fractures is worse the longer the drug is withheld. The extractions for Prolia patients should therefore take place near the end of the 6 months after Prolia was last administered and ideally 2-3 weeks before the 6 month point so that adequate healing may take place before the next Prolia is given.
https://nqsurgicaldentistry.com.au/prolia-the-dental-significance-ph-70/#:~:text=The%20optimal%20time%20for%20any,longer%20the%20drug%20is%20withheld.
This from a dental surgeon's office. I havent located the 2020 study.
There is an ongoing study about the length of time you can remain on Prolia. Every year of the study extends the positive duration. I think it is at ten years now, because the length of the study has reached ten years.

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So, you have a tooth that needs to be pulled because of infection. So you have been on Prolia for 4 years. What do you do a) Stay on antibiotics the rest of my life hoping to not develop an immunity to antibiotics. b) Pull it out and hope for the best…Endo says don’t pull it but gives no recourse. Dental Surgeon has no recourse either. Was not even told about Prolia pros and cons. Now that I am informed…I am mad that I was even put on it. This drug is heaven for the drug company…have to take it forever….or die from side effects.

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@cdst

So, you have a tooth that needs to be pulled because of infection. So you have been on Prolia for 4 years. What do you do a) Stay on antibiotics the rest of my life hoping to not develop an immunity to antibiotics. b) Pull it out and hope for the best…Endo says don’t pull it but gives no recourse. Dental Surgeon has no recourse either. Was not even told about Prolia pros and cons. Now that I am informed…I am mad that I was even put on it. This drug is heaven for the drug company…have to take it forever….or die from side effects.

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I hope that your doctor works with you on this. All medical treatments involve risk/benefit evaluation.
My doctor had me take a break from the prolia before having a molar pulled then a continued break before resuming treatment. I had no adverse affects from the break or the extraction.
Also there is a medication that you can take to kind of lock in the gains from prolia after you take it for a couple years then discontinue.
If your doctor isn’t giving you information and options, would you be willing to get a second opinion?

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cdst, sorry you are in this situation. The antiobiotic solution isn't great because if the bone is avascularized from the Prolia treatment, an antibiotic will have difficulty reaching the infection. It could protect your heart, though.
I'd have it pulled, take the antibiotic and add Tymlos or Forteo to the Prolia until the socket heals. Then I'd switch to Reclast for a year. Even though Reclast has the same risk of osteonecrosis, it is the only medication that protects us from the osteoclasts preserved by Prolia. And even that protection it thought to be not quite adequate. Some oral surgeons won't even consider dental surgery when the patient is on Prolia. Some doctors (the ones that work for Amgen) recommend proceeding with dental procedures.
Risk percentages look very small when you aren't the one. Still, you might sail through this without and problem.

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