osteopenia and prolia shots- what's your opinion?

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NoteRed
NoteRed Member Posts: 86

Hello to all,

I 'm 4 months post chemo and 2 months post rads. I had my DEXA scan for bone density and shows osteopenia. My others exams are good (I had ct scans after chemo and now ultrasound checks). My MO advised me to take D3 vitamin and start prolia shots every 6 months. Whats your opinion/experience on that? I'm quite afraid to start...

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  • letsgogolf
    letsgogolf Member Posts: 263
    edited December 2018

    After nearly 2 years on Arimidex, I also now have osteopenia of lumbar spine only. My DEXA scan was fine before. My doctor also suggested a Prolia shot every six months. I began doing some research on this because I was going to have to pay half. My insurance company will only pay half and I hesitated to pay over $800 out of pocket for each injection. I decided to try Boniva instead but must tell you that the side effects were horrible for me and I don't usually ever experience side effects from meds. In fact, I have none from Arimidex. I am switching to Fosamax which is a pill taken once per week. Anxious to see how this goes. Fosamax is available as a generic and my cost from Express Scripts is only $10.10 for a 3 mo. supply. I will also say that my sister was on Boniva for almost 8 years and after progression to Osteoporosis she is now having Prolia injections and having no side effects from the shots. Fortunately, her insurance covers the entire cost.

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

    letsgogolf - Amgen, the maker of Prolia, has some patient programs available to help pay for Prolia should you continue to experience side effects from the oral meds. Here is a link for those who have high out-of-pocket costs after insurance payment.

    https://www.proliasupport.com/

    notered- I was on Prolia for six years (2012-2018) for osteopenia that worsened on chemo and anti-hormonals. I had an excellent response and regained a great deal of bone density on Prolia with no identifiable side effects. Here is another thread with posts from other members who are on Prolia, or thinking about starting it.

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

  • LeesaD
    LeesaD Member Posts: 383
    edited December 2018
    I had osteopenia prior to beginning anastrozole so my MO and endocrinologist suggested going straight to Prolia. I have had two shots already and will be getting my third next month. I’m already scheduled for bone density test the day I get my next shot. My endocrinologist wants to see if there’s been any improvement as it will be a year since beginning the shots. No side effects at all so far from Prolia. It’s been one of the easier treatments which I’m thankful for.
  • NoteRed
    NoteRed Member Posts: 86
    edited December 2018

    Thank you all for your answers. The other thing is right after chemo (maybe a month later) I've developed a pain which comes and goes at my right hip. I did an x ray and it showed bursitis. did you had that kind of pains?

    - letsgogolf luckily I dont have this issue because I'm in Greece and my public insurance covers all of the cost of Prolia shots. So I'm hoping only for no SE

    -SpecialK did you stop them? I'm afraid that I could not stop them if I start. But its a good thing that they were good for you...

    -LeesaD I'm on tamoxifen and monthly shots for the ovaries (I dont remember the name). But I think I must have had osteopenia before any treatment.

    I think I will give it a shot (of Prolia)....hoping without SE

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

    Usually it takes several Prolia injections to see improvement, LeesaD - hopeful that you see some, I definitely did at my DEXA by the 4th one.

    notered - Yes, I stopped in March of 2018 per my MO - he wants to see what happens at my DEXA in January of 2019. I was an exceptional responder to Prolia in that I regained more density than any of his other patients, and it took me from the edge of osteoporosis back to a normal density. I am taking a bit of a drug holiday, but will resume Prolia if I have lost too much at that January DEXA. Side note - I did have an injury to my hip (too many stairs while moving my daughter into a third floor apartment - that resulted in hip pain about a week later. MRI showed trochanteric bursitis, multiple stress tears of the gluteus medius muscle, and fluid in the hip joint. Physical therapy over a one year period resolved the problem - slow, but effective, process and I was on Prolia that whole time.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited December 2018

    SpecialK, That is good to know. Financial assistance was briefly mentioned to me but to be honest, I didn't pay much attention because I assumed it was only for low income people and that I would not qualify. The link you gave indicated that there are no income requirements and so if the Fosamax doesn't work out I will definitely check into Prolia once again. Thanks for the info.!

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

    letsgogolf - you're welcome!

  • smo23915
    smo23915 Member Posts: 165
    edited December 2018

    Hi Special K,

    How many Prolia injections did you have- I have had 10 (5 years) and not sure what will happen next. My endo is saying one more year than take a year off, but I am concerned about rebound fractures if I stop. Have you heard anything about rebound fractures when you stop?

    Thank you,

    SMO

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

    smo23915 - I had 13 injections, started in Feb of 2012 and stopped this past Mar of 2018. I have read about the fracturing, particularly vertebral, upon stopping, but do not personally know of anyone that this has happened to. I am currently in a dental situation involving an old crown with bone resorption that required an extraction that was done in Nov with a bone graft, and will need an implant sometime in 2019. This is considered unrelated to either Femara or Prolia by the oral surgeon - but it means that right now I can't resume any bone density treatment.

  • stellamaris
    stellamaris Member Posts: 384
    edited December 2018

    I have had aositive experience with Prolia. Taking 2 injectionser year since 2014, in addition to D3 and calcium. i was told that it cannot be stopped cold turkey. I will have my last injection spring 2019, and then will have a zometa infusion in place of the final prolia injection. The zometa infusion apparently is good for 1 year and 'weans' the patient off prolia. I have had no side effects to date and my dexaesults improved.

  • smo23915
    smo23915 Member Posts: 165
    edited December 2018

    Thank you SpecialK, I thought you were on the medication for quite some time. Good luck with your implant, I hope your DEXA looks good next year.

    Stellamaris how many injections did you have? Sounds similar to mine..10 injections? Let us know how you do with the Zometa infusion, I have been told it is common to have some flu like symptoms after the injection.

    Sharon

  • stellamaris
    stellamaris Member Posts: 384
    edited December 2018

    oops, typo - i started Prolia in 2016, so 6 injections to date.

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