Prolia and Radiation

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fifthyear
fifthyear Member Posts: 225
edited March 2019 in Bone Health and Bone Loss

Been diagnosed with Osteoperosis couple years now, doc is pushing for Prolia. During my research, found this website https://www.rxlist.com/prolia-drug/patient-images-side-effects.htm which clearly states:

"Some people using denosumab have developed bone loss in the jaw, also called osteonecrosis of the jaw. Symptoms may include jaw pain, swelling, numbness, loose teeth, gum infection, or slow healing after injury or surgery involving the gums. You may be more likely to develop osteonecrosis of the jaw if you have cancer or have been treated with chemotherapy, radiation, or steroids. Other conditions associated with osteonecrosis of the jaw include blood clotting disorders, anemia (low red blood cells), and a pre-existing dental problem"

This scares the sh!& out of me. Granted drug companies list all possible side effects for liability coverage, but this is quite specific.

Does anyone here actually develop ONJ?

Doc said either Prolia or Reclast. Both in the same class, side effects stay in body for a long time. Taking Vit K2, D3 and Calcium now but worry about fracture.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2018

    fifthyear - ONJ is indeed scary, but pretty rare. I believe there have been a few BCO members who have had issues with it, but I don't know their diagnoses offhand. The above warning is generic and Denosumab is also the active ingredient in Xgeva, which is given on a more frequent dosing schedule, and in a larger dose, so it is more cumulative. Xgeva is given to breast cancer patients with bone mets, but also to bone cancer patients who are more likely to experience issues with ONJ. I have been on Prolia since Feb of 2012, no issues and I already have pre-existing jaw problems with TMJ. Prolia and Reclast are not in the same class of drugs, Reclast is a bisphosphonate and Prolia is a monoclonal antibody, and they accomplish bone strengthening in different ways. HEre are links to some Prolia threads, you can also type Prolia in the Search function for individual posts across a variety of threads:

    https://community.breastcancer.org/forum/120/topics/842125?page=1

    https://community.breastcancer.org/forum/78/topics/827380?page=1

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited March 2019

    Hello,


    I just saw this post. I do not know if you have made a decision yet or not. I was advised to see my dentist before starting Prolia. I was told within 1 year I would lose my teeth so it was determined to have oral surgery and remove all my teeth first and go with dentures. Cannot have the implanted ones either by the way.
    AFTER I was all healed then started my Prolia.

    My step-mother has been on Prolia for several years and lost teeth and no one had told her that was the cause either (not a cancer patient either). She was surprised to learn when I went through this last year and why.
    Best of luck.
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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited March 2019

    My dentist said she had never seen it. My PCP said it was nasty. I refused it, will take my chances with fractures. It a tough decision we are each our own advocates. I had open TMJ surgery (4hours) years ago. Wasn’t pleasant. Don’t want my jaws messed with any more.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2019

    I knew I'd need invasive dental work somewhere down the line, and I already have osteoporosis, so the whole AI + Prolia was just too much to handle mentally. When I told my MO that, she said, okay, let's do Tamoxifen. My reproductive organs are long gone, and although there's a slight risk of clots with Tamoxifen, I already take low-dose aspirin, a statin, and Omega 3-6-9, so I'm about as safe as can be.

    I love my MO. She's always a step ahead of me and watches out for things before I think of them.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2019

    Alice - I haven’t lost my reproductive organs - not that I need them anyway - but I have osteoporosis too. Brutal sometimes. I take Boniva 1x a month, Vit D3 and calcium. It’s gotten a lot better. My internist wanted me to try Prolia shots but I said no. I’ve read too many negative things about it plus from what I’ve heard it’s real expensive even with insurance.

    I took Tamoxifen for 5 years. I had joint pain but nothing unmanageable. My MO told me I could cease and desist taking it after 5 years because she said the risk of clots was a side effect and why take a chance plus I had an early stage IDC. I’m 7 years out last August.

    Diane


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