Prolia anyone?

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Catsme
Catsme Member Posts: 74


Hi all,

I've been taking an AI since 2017, and will begin Prolia injections in March. If you've had these injections I would really appreciate hearing your experience with this. Side effects, timing of injections, etc. Bisphosphonates scare me.

Thanks

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  • JoE777
    JoE777 Member Posts: 628
    edited February 2019

    I was on Prolia for two years. Injection every six months. Slow shot in upper arm. Only side effect a little pelvic bone pain intermittently for a couple of days. I had osteopenia before treatment and never moved to osteoporosis. Stopped all treatment after two years. You can see my signature.Right now bisphosphonates have saved my life and did it quite quickly. Sorry for the added fear on top of cancer. J

  • Veeder14
    Veeder14 Member Posts: 880
    edited February 2019

    I was on Prolia for 1.5 years~3 injections worth. I felt like I had the flu everyday, sort of achy. But the reason I quit was because I had an abcessed tooth that needed to be pulled and the dentists (checked with a couple of dentists) refused stating that it was too dangerous because of being on Prolia and the concern for jaw necrosis. After my Rheumatologist spoke with the dentists they agreed to work on me after I had been off Prolia for 6 months. Luckily, it was month 5 when my tooth problem needed attention and I took a month worth of antibiotics while waiting for the 6 month mark. No problems with the extraction at all. But my teeth aren't very strong and there's no way I want to be in that position again. For the bisphosphonates/Prolia the instructions are to get a dental exam before starting treatment but there's no guarantee a patient won't need dental care during treatment.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2019

    Prolia is not a bisphosphonate, that class of drugs is either oral meds like Boniva, Fosamax, Actonel, or IV like Reclast. Prolia is a monoclonal antibody drug that works by a different mechanism of slowing old bone resorption to allow new bone creation to catch up.

    There are a couple of existing threads on Prolia, linked below.

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

    https://community.breastcancer.org/forum/78/topics/868932?page=1#post_5331620

    https://community.breastcancer.org/forum/78/topics/868633?page=1#post_5317881

    https://community.breastcancer.org/forum/120/topics/857839?page=1#post_5311318

  • Catsme
    Catsme Member Posts: 74
    edited February 2019

    Thank you all for the responses.

    JoE777, can you share how bisphosphonates saved your life?

    Veeder, I am under the watchful eye of a periodontist due to gum issues a few years ago. All healthy now, but I did discuss this with him, and he said they won't perform any surgery on anyone on the infusion bone meds without the 6 month break. Sounds similar to your experience. Is infusion different than injection?

    SpecialK, I will take a look at those threads.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    I have been on Prolia for 2.5 years. I think they plan to have me on it for 3 years. The last 2 times I have had a sinus infection 2 weeks afterwards, but since both were during my bad time for allergies, it could be unrelated to the shots. Other than that, no problems.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2019

    catsme - the injection is Prolia, the monoclonal, the infusion is Reclast/Zometa - or zoledronic acid, which are bisphosphonates. While not the same drug class or mechanism, both are regarded similarly in terms of dental work and the need to be off for 6 months before invasive procedures or an extraction. Routine dental work can be done at the half-way point between injections of Prolia at 3 months afterward, not sure about bisphosphonates because some are taken daily/weekly/monthly, cleanings can be done any time.

  • Catsme
    Catsme Member Posts: 74
    edited February 2019

    One thing that makes me nervous is that I did try Fosamax and had and within 20 minutes of taking the pill I was barley able to get to the bathroom in time due to diarrhea. I have the first injection scheduled for a Friday and hopefully that will give me the weekend to adjust to any side effects. Hopefully I'll have no problems. I guess breast cancer and it's treatments are the gifts that keep on giving

    You are all so helpful! Thank you.


  • letsgogolf
    letsgogolf Member Posts: 263
    edited February 2019

    Like you, I have been on Arimidex since 2017 with no issues other than developing osteopenia of the lumbar spine. I had a dexascan 1 month before the cancer diagnosis and was fine so I am sure it developed from Arimidex. My doctor wanted me to start Prolia shots every 6 months but I pushed back for a couple of reasons. I couldn't find anywhere online that Prolia was approved for osteopenia and I kind of wanted to save this in case I developed Osteoporosis down the road. Second, my insurance would only pay for 1/2 of the cost and so my cost would have been over $800 x 2 times per year. Instead, I tried Boniva first. It is a pill, taken once a month. I rarely ever have side effects from meds but Boniva was different. I took it twice and had severe naseau and diarrhea for 2 weeks. The first month I actually thought I had food poisoning due to the severity. Six weeks ago I switched to Fosamax which is a weekly pill. So far, so good. No issues at all. Both Boniva and Fosamax are available as generics and are inexpensive. I purchased both at Sam's Club with my plus membership. The cost was $10-$12 per month.

  • Veeder14
    Veeder14 Member Posts: 880
    edited February 2019

    Hi Catsme,

    Yes, infusion is different than injection. An injection is just that, a shot. Infusion is where the medication is put in through your vein and usually is for medication given for a year. I decided not to do infusions because that's a year's worth of medication given at once and if there are unwanted side effects I would be stuck until the medication decreases in my system.


    Hi Special K

    Good to hear that dental work can be done at the half way point, 3 months. But still having something like an abscess for that long is dangerous as well as painful.

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