Need experience/advice in discontinuing Prolia (denosumab)?

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d67austin
d67austin Member Posts: 4
edited February 2019 in Bone Health and Bone Loss

I just had my first Prolia injection after encouragement from my MO and from a menopause physician. I was diagnosed with DCIS in October of 2015, treated with lumpectomy/radiation/aromatase inhibitor. My 2016 bone density scan before I began the AI, anastrozole, showed osteopenia. I also have arthritis in knees and hips, resulting in knee replacements in 2016 and 2018. My 2018 bone density scan showed osteoporosis in right hip and worsened osteopenia for everything else.

Of course, I really read more about Prolia AFTER I got my first injection and now I am scared. I don't need more side effects and more medicine. Eczema, high cholesterol, fractures of the femur are possible side effects. If you discontinue Prolia, then the result can be multiple vertebrae fractures. I am only 71 years old, and the thought of taking this for the rest of my life and then treating side effects - this is not the thing I want.

I want to discontinue the Prolia injections and my question is has anyone discontinued Prolia and what is your experience and advice?

Thank you

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  • gailmary
    gailmary Member Posts: 332
    edited January 2019

    is it Prolia only 2 x a yr or Xgeva monthly? Its the same drug but a different dose. Did the dr tell you how Xgeva helps prevent the cancer from settling in your bones? Or how much you will need? Big decision. It is scary to me too but it hasnt bothered me yet. He said Xgeva monthly for 3 yrs then every 3 months. I thought recent studies said. 2 yrs was enough. Maybe the Prolia is enough if youre not stage 4. Good luck.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2019

    Why do you think that you will have any of those side effects? There may be risk but a broken hip is probably worse. Certainly, talk to the prescriber regarding your concerns. Be sure to consume sufficient calcium with vitamin D and pursue (safe) weight bearing exercise. Perhaps you have already rejected bisphosphonate treatment which would usually be an oral tablet taken on an empty stomach once a week or monthly.

    You might want to consider adding more of your history and therapies to your profile so that others can understand your situation a little better. Those of us with metastatic bone disease are happy to have these options available!

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  • d67austin
    d67austin Member Posts: 4
    edited January 2019

    Hello, thank you for your replies. I have 6 months to make this decision and I am studying the pros and cons. The Prolia injection is given every 6 months.

    I found these studies about discontinuing Prolia. I only have 2 more years to be on the aromatase inhibitor and I think understanding the exit strategy on this drug is important.

    1) Swiss Medical Weekly, Aug-8-2017 "Osteoporosis drug treatment: duration and management after discontinuation. A position statement from the Swiss Association against Osteoporosis (SVGO/ASCO)"

    2) "Raloxifene Has No Efficacy in Reducing the High Bone Turnover and the Risk of Spontaneous Vertebral Fractures after Denosumab Discontinuation." (Gonzalez-Rodriguez E1,2, Stoll D1, Lamy O1,3.) Sep-17-2018

    Abstract

    At denosumab discontinuation, an antiresorptive agent is prescribed to reduce the high bone turnover, the rapid bone loss, and the risk of spontaneous vertebral fractures. We report the case of a woman treated with aromatase inhibitors and denosumab for 5 years. Raloxifene was then prescribed to prevent the rebound effect. Raloxifene was ineffective to reduce the high bone turnover and to avoid spontaneous clinical vertebral fractures. We believe that among the antiresorptive treatments, the most powerful bisphosphonates should be favored, and their administration adapted according to the serial follow-up of bone markers.

    3) "Stopping Denosumab." (Lamy O1,2, Stoll D3, Aubry-Rozier B3,4, Rodriguez EG3,5.) Jan-18-2019

    Abstract

    PURPOSE OF REVIEW: Denosumab discontinuation is associated with a rebound effect manifesting by an increased risk of multiple spontaneous vertebral fractures. The purpose of this review is to (1) better characterize this risk and (2) find solutions to avoid it.

    RECENT FINDINGS: In the absence of a potent bisphosphonate prescription at denosumab discontinuation, the frequency of multiple vertebral fractures is common or frequent (≥ 1/100 and < 1/10). In five recent case series, the median number of vertebral fractures was 5 within 7 to 20 months (median 11) after the last denosumab injection. Prescribing bisphosphonate before starting denosumab and/or after stopping denosumab may reduce this risk. However, only small case series have evaluated these strategies. After the second denosumab dose, there is a rebound effect with an increased risk of multiple vertebral fractures. A potent bisphosphonate prescribed at denosumab discontinuation could reduce this risk. As denosumab discontinuation is characterized by many uncertainties, denosumab is a second-line treatment for osteoporosis. Studies are urgently needed to define the management of denosumab discontinuation.

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  • LizM
    LizM Member Posts: 963
    edited January 2019

    I have been on prolia for my osteoporosis since fall 2016. I have not had any side effects from the shots at all. My endo who treats my osteoporosis told me that when she takes me off, she will probably give me at least one RECLAST injection. I was on Femara for 10 years and we thought that is what caused my osteoporosis but then last year I was diagnosed with hyperparathyrodism, which also causes osteoporosis. It appears I had a double whammy. I had surgery last year which cured my hyperparathyrodism, and stopped femara after 10 years, so now we have to work on my bone loss. When you have hyperparathyroidism they also check your forearm (that is where the disease hits the bones the hardest) and my T score was -4.7, ouch. Prolia did improve my hips and spine to -2.5 but with the -4.7 in forearm I am continuing on Prolia for at least another two years. I also believe that Prolia may possibly help reduce risk of recurrence, at least it can't hurt so I am fine with continuing since i have no side affects. BTW, I have periodontal disease from my bone loss and Prolia has had no negative affect in that area.


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited January 2019

    These drugs frighten me, too. Here are some thoughts to discuss with your doctors, austin.

    1. Weight-bearing exercise

    Someone told me about 8 Iyengar yoga poses for bone health, based on a study. The study author has written a book:

    Yoga for Osteoporosis: The Complete Guide by Loren Fishman MD and Ellen Saltonstall MD

    https://www.yogauonline.com/yogau-wellness-blog/yo...

    http://www.huffingtonpost.com/2013/04/24/yoga-for-...


    2. Good nutrition for bone health.

    The Combination of Micronutrients for Bone (COMB) study is interesting. They used five supplements instead of the usual drugs (bisphosphonates) and got good results. Vitamin K2, magnesium, docosahexaenoic acid (DHA), vitamin D3, and strontium. It is easy to incorporate foods with the first four into one's regular diet. For example: K2--Eggs, grass-fed gouda cheese, and many other options; Magnesium -- Dark leafy greens like spinach and kale, nuts and seeds, beans; DHA -- salmon, sardines. D3 -- supplement. Your doctor can order a blood test for 25 OH-D. 2000 iu D3 per day is what I take. It appears that vitamin K2 may be important to keep the calcium out of arteries and into bones.

    I eschew calcium supplements per my onc's recommendation (she said they are not proven to help bones and may harm heart health), and consume a moderate amount of kefir, yogurt, and cheese (organic and grass-fed). Apparently the fat composition of grass-fed dairy is better for us.

    Abstract:

    Combination of Micronutrients for Bone (COMB) Study

    "Along with other investigations, patients presenting to an environmental health clinic with various chronic conditions were assessed for bone health status. Individuals with compromised bone strength were educated about skeletal health issues and provided with therapeutic options for potential amelioration of their bone health. Patients who declined pharmacotherapy or who previously experienced failure of drug treatment were offered other options including supplemental micronutrients identified in the medical literature as sometimes having a positive impact on bone mineral density (BMD). After 12 months of consecutive supplemental micronutrient therapy with a combination that included vitamin D3, vitamin K2, strontium, magnesium and docosahexaenoic acid (DHA), repeat bone densitometry was performed. The results were analyzed in a group of compliant patients and demonstrate improved BMD in patients classified with normal, osteopenic and osteoporotic bone density. According to the results, this combined micronutrient supplementation regimen appears to be at least as effective as bisphosphonates or strontium ranelate in raising BMD levels in hip, spine, and femoral neck sites. No fractures occurred in the group taking the micronutrient protocol. This micronutrient regimen also appears to show efficacy in individuals where bisphosphonate therapy was previously unsuccessful in maintaining or raising BMD. Prospective clinical trials are required to confirm efficacy."

    https://www.hindawi.com/journals/jeph/2012/354151/

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  • d67austin
    d67austin Member Posts: 4
    edited January 2019

    Thank you, Shetlandpony, I appreciate the link and I am encouraged that I will be able to help myself without the drug, if I can just get off the drug safely. I hope the rebound effect is limited to after the second shot and not the first one.

    So far, only one week into having the drug, I have had flu-like symptoms (fever, flu headache), night sweats, and backache (needles and aching). But these are not worrying to me, it is just the getting off the drug that is worrying me.

    LizM, thank you, I read about Reclast and since it is a biophosphonate and a powerful one, it sound like it will help with the rebound effect.

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  • Barbmak
    Barbmak Member Posts: 60
    edited February 2019

    I already had osteoporisis when I was diagnosed. I never wanted to take the once a week tablets because of studies, however now that I am taking anastrozole for ER+ cancer, which can lead to more bone loss, I was more afraid of broken hips/ bones then the Prolia. The only worry I have is if I have to have a tooth pulled I have to be off Prolia. I believe that none of the medications for bone loss protect you when you stop taking it. I am 70 and for now I will continue with Prolia. I am active, work out and do take calcium MO's suggestion.

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