Prolia side effects

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CBurt
CBurt Member Posts: 2

I was diagnosed with Stage 1 Breast cancer Dec 2014. Had surgery in January 2015, Radiation completed May 2015. Because my cancer is estrogen loving I went on Arimidex, and because of that I was at great risk for worsening my osteoporosis, so my Oncologist wanted me to be on bone strengthener. Discussed this with her at length, decided on Prolia. I've had 2 injections (once every 6 months).

I stopped the ARmidex because of the joint pain, and switched to Letrozole. the joint pain was much better. But I'm having a terrible time with UTI's, bladder infections, urinary pain, peeling skin, etc. The UTI's have cleared up with medication, but I'm still experiencing urinary pain.

thank you


Comments

  • stellamaris
    stellamaris Member Posts: 384
    edited May 2016
    Interesting - I have been on Letrozole since December and I am having a difficult time with my bladder - I have urgency issues and it feels like I never empty completely. I just finished a cycle of antibiotics because I thought I had an infection, but now I am not sure
  • cive
    cive Member Posts: 709
    edited May 2016

    Taking Xgeva (same stuff as prolia only twice as much more often) and also take letrozole. Haven't had any side effects except of course hot flashes and trigger thumb. The trigger thumb could also be because of mousing on the puter. Don't do touch pads.

  • youngjane52
    youngjane52 Member Posts: 2
    edited July 2016

    do you think that prolia could be causing the pain? That's one of the reasons I have decided not to do it. Am taking lots of calcium and vitamin d. See the Dr next month and will discuss further.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited August 2016

    have had no side affect from the prolia and take letrozole, but just talked with MO and my bp has been up since going on it. I am taking a 2 week break to see if bp comes down, What next,!

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2016

    I had originally wanted Prolia rather than Zometa because: Prolia is a shot (can be given into any muscle) whereas Zometa must be infused I.V. (and I have only one non-lymphedema arm and darn few decent veins in it); Zometa makes you feel like you have the flu (muscle, bone & joint aches, fever, fatigue) for several days afterward, while Prolia doesn't; there's increasing literature to the effect that Prolia offers better protection against bone mets; and there are more instances of paradoxical horizontal thighbone fracture on Zometa/Reclast than on Prolia.

    BUT I'm on Medicare, with both Part B and D supplements. My Part D is (in)Humana Enhanced, which is a misnomer if ever there were one (it won't even cover generic letrozole unless I “fail" three months on generic anastrozole first). Here's the rub: since Zometa is given via I.V. in the chemo or transfusion suite, it's a “treatment" which Part B, combined with that supplement (BCBS) covers 100%. But since Prolia is a shot, even if administered by a doctor at her office in a hospital cancer center, it's considered a “drug" (theoretically, I could inject it myself) and therefore subject to Part D. And my cheapskate Part D plan (supposedly the best in IL) won't cover one red cent of it........so my out-of-pocket cost would be $5,000 twice a year.

    My MO says my osteopenia, combined with letrozole, will eventually become osteoporosis unless treated with either a bisphosphonate (oral like Fosamax or Boniva or I.V. like Zometa) or Prolia. But she also says I'm not at such high risk for progression to osteoporosis that I have to do it right now, nor am I at high risk for bone mets. She suggests that come Oct. open-enrollment, I check to see which Part D plans will cover Prolia and schedule it once my new plan takes effect Jan.1. However, both std. insurers and Part D carriers are cutting their formularies (which drugs they'll cover) and shifting once-cheaper drugs to higher tiers (requiring higher co-pays), and it's possible that what may be covered in Oct. might not be come Jan. 1.

    I also read the fine print in the Prolia ad: “severe bone pain has been reported;" “serious infections and cancers have been reported." And that's the kicker--there might be more bone pain, longer lasting, than the fleeting flu-y feeling (repeat 3x quickly) from Zometa; and because Prolia (anything whose generic Latin name ends in “-mab" or “-nib") is a “biologic," to some degree it is an immunosuppressant...and I'm allergic to the three most commonly used groups of antibiotics--penicillins, sulfas, and floxins (e.g., Cipro). What good is stronger bones if I get lymphoma, multiple myeloma, MDS or succumb to a massive infection?

    So I sucked it up, put on my big-girl panties and messaged my MO I'd like to go ahead with the Zometa. Waiting for her nurse to get back to me with available dates so I can pick one with nothing to do for three days afterwards besides lie around feeling like crap.


  • Cakencobbler1
    Cakencobbler1 Member Posts: 13
    edited August 2021

    I took Prolia (1 injection) before my BC DX and was in horrible pain the whole time. Of course because it’s an injection there was nothing that could be done. Just had to wait it out. I took the generic Fosamax after that.

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