Discontinuing Prolia (denosumab): How can it be done safely?

@autieoakley and @colleenyoung I respectfully offer another opinion based on what I have been continually told.

My doctor, chair of endo at a major teaching hospital, does not prescribe Prolia unless absolutely necessary. He jokes that he will prescribe it when retiring so he doesn't have to deal with rebound. (He was also concerned about effects on my wonky immune system.)

According to what my doctor said, if a person is old enough to take it for life, then it might be a good option, especially after anabolics. Lately McCormick ("Great Bones" ) has apparently been saying that 1-3 shots of Prolia might be okay but still need to be followed up with a bisphosphonate.

If it needs to be stopped, bisphosphonates, especially Reclast, are a necessity. So if the reason for Prolia is intolerance of bisphosphonates, that does not make sense, unless Prolia is never stopped.

Rebound loss of bone density and increase in fracture is a well-known phenomenon w/cessation of Prrolia. We are not posting about it because of bad personal experiences. I for one have been told again and again, and read, that Prolia rebound is very risky. I have never taken it as a result nor has it been offered by any of the endos I have seen.

Ben Leder MD talks about the potent effectiveness of Prolia in his videos on YouTube as well as increased potency of intersecting with Forteo. Very positive info. But he also says he no longer uses it much because of rebound.

I am glad some people are not suffering rebound, which is mysterious given the biology, but clearly some have exceptional experiences. My friend went off Prolia and seems to be okay but her DEXA was barely osteoporotic at one site. Maybe DEXA scores make a difference.

This might sound like strong opinion but it's not mine. It is my doctor's.

This is the third doctor to recommend prolia. I have osteoporosis AND I am a faller. Just a couple of weeks ago, I fell and broke 4 ribs. X-rays shows osteoporotic bones. Regarding the rebound effect, he answered, then I would be weaned off gradually. I just really don't want prescription meds!

I was 'pushed' to take HRT as a young post menopausal woman, and of course, developed breast cancer that was estrogen receptive. NO WONDER I HATE PRESCRIPTION MEDS!

Overall, I feel good at age 76......... but fear a hip fracture. UGH!

This is good to hear. Thank you.

@marianepp how is anyone "weaned off" Prolia? I have never heard of that and if it is possible, we need to know. Is this doctor suggesting lowering the dose over time? Is this doctor not mentioning doing Reclast to manage rebound? I wonder if this is an endocrinologist. Any info on this would be welcome for all of use I am sure since many of us are avoiding Prolia, which is in fact a potent bone builder. I have just been told it is dicey to stop.

@windyshores, you're right that discontinuing Prolia (denosumab) causes a reversal of the drug's potent anti-resorptive effect and this leads to rebound. However, if used indefinitely contnuous use denosumab can be an effective treatment for the chronic lifelong condition of osteoporosis.

For everyone, this study is helpful in answering many of your questions about Prolia (denosumab)
- Discontinuing Denosumab: Can It Be Done Safely? A Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC9081316/

It addresses many of the issues revisiting in the Osteoporosis Support Group, such as
- What Happens If Denosumab Is Discontinued?
- What Are The Risk Factors For Vertebral Fractures When Denosumab Is Stopped?
- Should Denosumab Be Used Indefinitely?
- When Should Denosumab Be Discontinued?
- How Do We Stop Denosumab Safely?
- What Do Some Of The Guidelines Recommend?
- How Do We Handle Inadvertent Discontinuation Of Denosumab During The Covid-19 Pandemic?

@mariannepp, gosh, breaking 4 ribs must have been painful. I can imagine you are afraid of a hip fracture. Having osteoporosis and being a "faller" or prone to falls puts you at high risk of fracture.

I understand your reluctance to take medication. And you did your due diligence by consulting three doctors. That is important. I think you have your answer. Despite sharing your prescription history, you heard from each of the 3 medical professionals that your health with a life-long condition of osteoporosis needs some help with medication.

I hope you and your doctor can agree on the medication that is right for you. We are lucky that modern medicine has focused on osteoporosis to have discovered several medication options that work well to keep our bones healthy and reduce the risk of fracture. As we know, fractures can be serious and even life-threatening as we age.

@mariannepp, may I ask what makes you prone to falling? Have you worked with an occupational therapist or physical therapist to work on balance and ways to prevent falling?

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@mariannepp
I do not know your bone density scores and other pertinent details but I would think a bone builder would be what was called for if I was fracturing like that. Did your doctors discuss that option with you?

@windyshores you might want in on this.
One of your doctors mentioned weaning you off of Prolia as if that is something that they know can be done.
I found one study on this.
It's a study of weaning a 13 people off of Prolia. As they lowered the Prolia doses the bone loses increased. They went from 60mg to 30mg to 15mg. It doesn't look like they got them off Prolia. They say they preserved 40% of the Prolia gains but looks like they are still on Prolia. I believe that approach failed to preserve hip gains? And I do not see any mention of the potential for multiple spinal fractures when stopping Prolia. Only bone loss is being considered. I admit I did not study this paper carefully as I'm staying away from Prolia for the forseeable future.

Here's their summary "To date, no therapeutic protocol using bisphosphonates fully preserves bone gain after Dmab withdrawal. A progressive decrease in treatment preserves 40% of the gain at the spine.
More studies about Dmab tapering are needed and potential usefulness of combining bisphosphonates with low-dose Dmab remains an unexplored area.
Administration of 15 mg of Dmab is sufficient to prevent complete BMD loss and to keep CTX levels low. This approach could be an alternative when bisphosphonates are contraindicated following Dmab."
https://onlinelibrary.wiley.com/doi/full/10.1002/jbm4.10731

Thank you so much for this! I had been on Reclast for several years and my last DEXA did not show any improvements. Thus, my endo and I discussed trying something else. He said that he has seen excellent results with Prolia with a side note that I will be on it for the rest of my life. I had my first Prolia shot and had no side effects. Let’s hope that continues. Had none with Reclast as well. I have never fallen, no fractures, etc.

Everyone seems to be afraid of Prolia. I trust my doctor as he said that he would tell his mother to take it when and if needed. Shopping around for a doctor to get the answers you want because you are reading so many articles is not a good thing. Who is writing the article? Doing the research? There is a ton of misinformation out there!!

When i have any doctor’s appointment, I ask a ton of questions! I am not looking for the answer I want but the reason why a certain drug is recommended for me. I have already done my research before I see the doctor. As i mentioned, you have to be so careful with the research out there and this is coming from someone who was in the healthcare business. I apologize for ranting on and on but people, stop shopping around for doctors to get the drug you think is right for you or for answers you want to hear.

Who is Dr. Ben Leder? I am suspicious of any doctor with a you tube site!