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Best tolerated bone med?

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polkadot1
polkadot1 Member Posts: 46

I already had Osteoporosis in my spine prior to BC but had maintained my scores for many years with low-dose estrogen. Well, that is now out the window and my latest bone density scan shows I lost 9% in one year (and I wasn't even on a full dose of Anastrozole during this time due to the trouble I am having tolerating it). Needless to say, I don't do well on ANY medication. It has been that way all my life. I take children's dosages when possible. But now, I can't run from this Osteoporosis any longer. I am needing to either try Reclast or Prolia very soon and am trying to determine which may have less side effects. My endocrinologist strongly prefers Reclast as he says Prolia only works while you take it then you have a strong rebound of bone loss afterward. Of course you can follow up with Reclast then. OR, I take Reclast now and hopefully maintain or even build a bit back. I tried Fosamax a few years ago and had digestive issues but am planning to give it one more try before going to the big guns. I highly doubt I will react any differently now but in my mind I have to give it one more try.

Any personal experiences would be greatly appreciated. I am scheduled to see my MO on Friday so am needing to discuss.

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  • minustwo
    minustwo Member Posts: 13,116
    edited January 2021
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    Polkadot - there are lots of detailed discussions about Prolia. Check under search and you can see what many of us are doing. Personally I'm about to have Prolia #10 and am keeping Reclast in the tool box for down the road. I have an appointment with a bone endocrinologist this week to discuss a 'drug holiday' and will be posting updates on the other active threads.

    I just found this chart at the National Osteoporosis Foundation.

    https://www.nof.org/patients/treatment/medicationa...


  • polkadot1
    polkadot1 Member Posts: 46
    edited January 2021
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    Thank you MunusTwo. I have read and read on different treatments and am still just having trouble deciding. The brain fog I get from Arimidex doesn't help my decision making abilities. :(

    Thank you for the link you provided as well.

  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2021
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    Polkadot I lost a significant amount of bone density last year as well (hello, menopause). I met with an endo who upon review thinks I should start my treatment with reclast. His theory is we can use that for a while, build up the bone, then if needed switch over to prolia. My MO thinks reclast a good idea because in her words "if you happen to have anything undetectable going on in your skeleton the reclast might knock it down so two for one". Just a different perspective. I hopefully will be starting treatment in a couple of months. I am clearing up a dental issue right now. My MO requires a written release from the dentist stating oral health is ok. Make sure you don't need any crowns, extractions, etc before you begin.

  • muska
    muska Member Posts: 224
    edited January 2021
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    I vote for Prolia. This is based on my persand also on research studies that demonstrated lower risk of bone mets in women on Prolia.

    I stayed on Prolia for four years (eight injections in total) without any side effects whatsoever. I self- administered the injections at home. By the end of the 4th year my bone density was better than before my BC diagnosis and treatments. I returned to 'normal' range.

    I received one infusion of Reclast after I stopped Prolia. Apparently, this is supposed to slow down the deterioration after stopping Prolia. I had a reaction to Reclast infusion that took two days to get back to normal (very high fever and flu-like symptoms.)

  • moth
    moth Member Posts: 3,293
    edited January 2021
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    Prolia has been easy peasy for me as well. It's ~$300-500/ injection & I've read on this board that not all insurance plans will cover it so that might be a consideration in making a choice.

    (& for those thinking about bone mets, the same medicine as prolia, at a different dosage, is used to control bone metastases)

  • polkadot1
    polkadot1 Member Posts: 46
    edited January 2021
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    Thank you guys so much for your input. It is invaluable to hear other's experiences. I meet with my MO tomorrow and will see what she thinks. She was wanting to hold off until all my issues with Arimidex settled down before adding another drug. Unfortunately that has not happened and I continue to have trouble tolerating it (even after having a month break from it) But my bones are deteriorating too quickly so I know I have to add something now. I have heard about the Prolia cost and that is a very real possibility that my insurance will not want to cover it.


  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited January 2021
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    I had a long talk with my oncologist today including this, but for other reasons. My last Prolia I had fever and body aches and felt rotten (and had to go to ER to make sure not COVID or neutropenic fever or anything) BUT that was given same day as my Kadcyla so it might have been just too much. And basically she says (what my research had already led me to believe) that the data favoring Prolia vs Zolendronate for bone met prevention just isn't there to favor one over the other.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited January 2021
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    YesLama dragon,

    I was on a much older bone strengthener, Aredia (Pamidronate) but my mo was concerned about femur fractures and ONJ. Additionally, she felt that the research was not strong enough to support its use as any protection against further mets.

    BTW, I forgot to tell you that I came to knitting via nålbinding . This is an obscure fiber art which is like a single needle knitting, but not exactly. It’s worked with finite lengths of yarn (animal fibers so you can felt the joins) and spit spliced to join the pieces.

  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited January 2021
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    I have long wanted to learn nålbinding. Ancient craft! And actually, while my wrists are so messed up and i can only knit for brief periods I might give it a try. But my spinning wheels are also feeling neglected!

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2021
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    I saw a bone endocrinologist who specializes in osteoporosis, bone drugs & esoteric things like ballet dancer's legs & runners bones. Basically he told me Prolia is now rated safe for 10 years. I just completed year 5. You should NOT miss your 6 month shot by more than a few weeks. If you contemplate a drug holiday, there isn't enough information yet to say a Reclast shot would work, although there are ongoing trials with results maybe in the next year. His recommendation was Fosamax in the interim if you have to stop Prolia, which you can now take once a week.

    If you have to have dental work done on Prolia, schedule the last 4 weeks before the next shot is due (5 months). But do NOT skip a dose.

  • polkadot1
    polkadot1 Member Posts: 46
    edited February 2021
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    MinusTwo- Thank you for the update from your endocrinologist. I am still undecided on what to do. My endo (who also specializes in osteoporosis, metabolic bone disorders, NASA consultant, etc) strongly favors Reclast and my MO is fine with either but felt I may have fewer side effects from Prolia. So I actually was ready to proceed with Prolia until I read reviews. I know that people that post bad reviews are not the typical user since only people with issues usually post. However, it was the extent of their bad experiences/ side effects and the length of time they've dealt with them that gave me pause. The Reclast reviews did seem to have more short term effects (flu like symptoms etc) but not as many life altering long term effects. It would be different if I wasn't the "poster child" for side effects :(.

    Anyway, I appreciate your input as if affirms what my endo said "that Prolia is like a highway without an exit ramp at the moment" You must commit to it for the long term. I am only 57 so I have to be careful how I choose to manage this condition.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2021
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    Interesting PolkaDot. I have had absolutely NO side effects on Prolia - NONE - and I've been on it 5 years. I've had some other issues - Adriamycin, Lovanox, Latex, Anesthesia - and some food allergies, but but nothing at all related to Prolia.

    Please do come back & update us once you start Reclast. I'm always looking for feed back.

  • letsgogolf
    letsgogolf Member Posts: 65
    edited February 2021
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    I have been taking Fosamax without any issues at all and my Osteopenia has improved a little. Fosamax is taken once a week and is very inexpensive. I get mine at Sam's Club - 12 tablets (a 90 day supply) for $12. My doctor suggested Prolia but after reading about it and then learning that my insurance would only cover 1/2 of the cost ($800 out of pocket), I decided to try Fosamax instead.

  • polkadot1
    polkadot1 Member Posts: 46
    edited February 2021
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    MinusTwo - that is so fantastic that you have had no side effects at all. If only I had a crystal ball :) I would prefer to take Prolia since it is a simple shot compared to a reclast infusion. That just freaks me out to know if I do have a side effect, it is in my system for a very long time. I am also trying to look at my long term plan too, not just while on AI.

    letsgogolf - Thank you for your input on Fosamax. I did try that a few years back with some GI issues, but I am actually going to try it again just to give it one more shot before pulling the trigger on stronger drugs. My endocrinologist doesn't think it will be enough for me due to my scores being so bad but he was willing to let me try it.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2021
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    PolkaDot - I too tried Fosamax a long time ago. I was surprised it's once a week now instead of every day. My doc said at this point that's what he's recommend if I have to take a drug holiday from Prolia.
    Note for insurance coverage of Prolia - my shots were always given in my gyn's office so they were covered in full, instead of having to use the Medicare "D" drug program.

  • gerrib
    gerrib Member Posts: 60
    edited July 2021
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    Hello,

    I haven't read all this thread. I am 5 years post my second primary BC and 11 years post first primary.. I just spoke to my oncologist by phone. I haven't seen her for 4 years a I felt I could manage my treatment myself. I have been having annual diagnostic mammos and ultrasounds. She mentioned if I want to come off Prolia that I should have an infusion of Zometa beccause of the Prolia discontinuation syndrome. I intend to stay on it for another 2 years but am rather alarmed to hear about this syndrome. Has anyone experience vertebral fractures when discontinuing Prolia.