Prolia Shots for Increasing Osteopenia
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Thank you
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Hi friends, I am lurking today. The supplements are available on line but I have found them here in my city at places like Sprouts, Whole Foods, etc. if you have any of those nearby.
Hi Minus Two! Will see you all again soon!
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Ladies, just wanted to let you know that after four years on Prolia my recent DXA showed that I don't have any osteopenia. I had no side effects from the shots that I self-administered every six months. My MO wants me to stop. I will be having and infusion of Reclast in August.
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Wow Muska - GREAT news. How did you get to self-administer? No only I can't do that, but none of my docs will give me Prolia w/o blood tests first, so that's another different doc visit.
Is it just one Reclast?
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Hi MinusTwo, from the start I was given the option to get a pre-filled syringe for self-administration at home. The medication is covered 100% under my pharmacy benefit, I never paid even a copayment. I had two different major insurers over the past four years and never had any problems with either. Not having to go to clinic saves times and money. I remember at the very beginning my MO had me do two labs - magnesium and something else - which I did together w the rest of the labs that I have to get every six months anyway. Prolia was timed to be administered a few weeks after all the labs. Eventually, she stopped ordering magnesium and the other one altogether since my results had been stable. I don’t think those extra labs are required by insurance, probably this is up to your MO.
Speaking of Reclast, yes it’s a one time infusion that is supposedly recommended to make the transition smoother.
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Muska,
Thank you for this post, I’ve been on Prolia for three years and finally showing improvement. Was worried about when I have to discontinue in terms of transition. Is your MO monitoring this process?
Blessed July 4 to all
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Hi Butterfly, my MO wants me to have an infusion of Reclast that I will get in a few weeks. Another DXA will follow in two years. I am staying on Arimidex in the meantime. In two years we will reassess. If she sees significant bone loss again she has the option to put me on tamoxifen instead of AI or restart Prolia I suppose. We will cross that bridge when the time is right, I am not even thinking about it right now. Two years is a long time.
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Thank you Muska. Yes, we need to take it one day at a time,
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Muska - can I ask one more question? I have finished 4 years of Prolia (8 injections every 6 months). My MO and OB/Gyn seem to think 5 years is not a problem.
So after 3 or 4 or 5 years of Prolia, you stopped and had one Reclast shot? Did you have the Reclast six months after your last Prolia? Or did they give it right away? Or wait a year? Or ???
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Hi MinusTwo, like you I have finished 8 injections of Prolia over a four year period (every six months.) My last Prolia was in February 2020. My MO decided that’s enough for me for now. She had me have a DXA scan to capture the baseline after four years on Prolia. That’s done. She also scheduled me to get one Reclast infusion six months after the last Prolia. I will get it in a few weeks (not yet done)
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Thanks Muska. I'm going ahead with Prolia shot # 9 in August. I'm not willing to make waves with the medical establishment just now since every thing is crazy - particularly in Houston. But I will discuss this in August with my Ob/Gyn (who gives me the shots) and with my MO (who I might not even see once a year).
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I have been taking an AI for 9 years. My bone density has been negatively affected, so Prolia was recommended. I declined out of concern for some of the potential side effects, even with a low likelihood of occurrence (jaw necrosis, increased risk of vertebrae fracture).
I just had my annual follow-up with the oncologist who asked me if I was planning on staying on the AI longer than 10 years. I did not have any intention of staying on Letrozole past my 10 year mark and asked if there was any new data showing the benefit of staying on it. He said he wasn't aware of anything, but if I was his spouse, and I was tolerating the AI, he would encourage me to stay on the AI. He again recommended that I start Prolia shots and said if I declined, he would switch my prescription to Tamoxifen.
So now I'm facing the difficult decision of staying on Letrozole and adding the Prolia shots or switching to Tamoxifen with a new set of benefits and possible side effects. And determining whether I should consider staying on medication past the 10 year mark. I can't help but wonder at this point what would happen if I simply stopped taking the AI.
Has anyone else faced this dilemma?Dx Jan 2011, Right lumpectomy with full lymph node dissection Feb 2011, Chemo (Adriamycin, Cytoxin, Bevacizumab (clinical study), Taxol), Radiation, Hormonal Therapy (started on Arimidex, then switched to Letrozole)
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Hi Ihintz, I was on Prolia for four years and had no problems with it whatsoever. My bone density is now better than when I was diagnosed with BC in 2013. I don’t have osteopenia any longer.
I encourage you to try Prolia. It comes with an additional benefit: studies have shown reduced risk of bone mets in women on Prolia.0 -
Hi! I had osteopenia 2 years ago at dexa scan during radiation. Have had 4 total Prolia shots, plus taking D3, vitamin K, and calcium, working out, on top of letrazole. Minimal side effects from prolia or letrazole.
Just had another dexa scan, and I added 33% bone density. Now am top 99% for my age group (59). No more prolia necessary. Plan is to stay on letrazole for 5 years total, as per my oncologist. Even with my stats (see below), he thinks 5 years is plenty.
I'm not going to tell you what to do, but there's my story. Good luck!
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Hi. I'm new to this thread.
My onc wants me to start on Prolia but my insurance will only approve Reclast. He's going to try to fight/argue with them for the Prolia as he feels it's a better drug for me overall. I've had BC twice and been on Exemestane for 2 years now and my osteopenia has gotten a little worse over the last 2 years. My onc wants me to be on an AI for a total of 10 years so I'll be on something for my bones for 8 years.
J~
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jaybird - if you have issues with getting Prolia approved, even with a peer to peer review from your MO, it might be easier to get the approval if you do the Reclast first and then have your oncologist indicate that you didn't tolerate it. Often insurance wants to have a reason that the oral or annually infused meds, which are less expensive, are not appropriate for the patient before they approve the more expensive drug.
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I had zero effects from the 1 Prolia shot I had. I am also in the not getting approved by insurance boat, so I did not get a shot this year. Baseline DEXA in 2017 was osteoporosis in hip, osteopenia in spine. DEXA 2019 lost 5.7% in hip -spine score was not changed significantly. So, not even being diagnosed from the get go gets you approved either. It's frustrating but not worried about it until next year, next MO appointment.
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Yeah not sure what's changed w/ the pharma that makes Prolia but my insurance removed it from the formulary effective January 2020. So my second (and last) Prolia shot was all out of pocket. Ouch. And then I had an allergic reaction so now I'm on Tymlos, which I inject daily. And it's really expensive too, but covered by my insurance. So instead of the $1200 x 2, I pay $465 x 4 a year.
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So far, my insurance paid for my Prolia - I had my first shot last October and the second this past April. I see my oncologist in a couple weeks and will get my Prolia shot then. Cancer center says that they take care of getting it pre-approved. My insurance approved 2 doses. My oncologist said 2 -3 years on Prolia - I'll have a DEXA scan again next year this time. I haven't been on AIs since 2010 and my bone density keeps declining - I'm in the osteoporosis range for the past several years. Oncologist 2 years ago suggested Zometa and I wasn't sure cuz I didn't want to be in the infusion room, then it got taken off the table as it is hard on the kidneys so oncologist suggested Prolia. We are lucky to have a good insurance plan but I worry when DH retires and goes on Medicare - I will also be Medicare age then too. My pcp only takes the "advantage" type medicare plans. As a birthday present this year, they sent me a letter with what medicare plans they accept. I haven't asked my specialists.
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Karen - medicare pays for my Prolia shots in full every time. I get them at my OB/Gyn. Just had #9. However I do have "traditional" medicare. Because the shots are in the doc's office it doesn't get stuck going through the Part D drug coverage.
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For those who have insurance that does not cover Prolia or if you have to pay deductible, Prolia offers a co pay card. It literally took five minutes to sign up on the phone and they give you $1500 every year that goes towards your Prolia shot. I have a high deductible insurance plan and the cost of the shot is submitted and goes towards my deductible but I use the copay card to pay. It covers one shot plus a little bit towards next one. All info is on Prolia website and you just call and sign you up on phone. It’s so easy and you get $1500 every year.0
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SpecialK - I'll run that idea by my onc.
LeesaD - I'll speak with my onc and insurance company about your idea. I, too, have a high deductible before it's pretty much all paid at 100%. Plus, I have HSA I can use.
I have so much going on right now with HBOT (20 before my next surgery, then 10 after), new expander, then next year exchange that new expander for an implant and exchange my current implant with a new one due to capsular contracture. My BC journey has been fun - not.
Thanks for the help Ladies!
Jaybird~
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MinusTwo - I saw a gyn last year for the first time in 10. years due to an unusual finding on an ultrasound - turns out it was normal - had my last pap smear at the same time - now I'm back to just seeing my PCP (well, except for my specialists). Back to not seeing a gyn.
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Karen - your PCP may be able to do the same if he or she can order the dexa scans. I simply never had any doc for years except a GYN that I trusted with my life.
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MinusTwo - thanks. As long as insurance continues to pay, I"ll keep it with my oncologist. But good to know about PCP.
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Hi all, I am writing in this thread because recently I got prolia shot after being 4 months of monthly xgeva. I am a premenopausal MBC in bone. I did not take bone density test, very recent bone scan didn’t say anything about being in osteoporosis condition, and I have some big tumors in my spine. Please share your experience, I want to know why this drug is suggested, how long should be on prolia, and how to discontinue this drug. I will ask these questions from my MO but I’d like to have a better understanding beforehand. Thank you.
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beat-it, I'm on Prolia - had my 3rd shot today - for osteoporosis and prevent mets (small %). My oncologist said 2 - 3 years, so 4 to 6 shots - they are every 6 months. Bone density again in a year (had one last fall)
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I-beat-it - Prolia and Xgeva are the same drug -denosumab - but they are in differing strengths, and given in a different timeframe. Xgeva is given to those with bone mets and/or bone cancer - usually at 120mg each month, Prolia is for those with osteoporosis or osteopenia (andfor some cancer patients on anti-hormonals) and is 60mg every six months. I would ask your oncologist why they are making this switch, as you would be receiving substantially less of the drug.
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Me again - lol.
So, insurance says Prolia not covered. Contacted Amgen. Tried to get covered through them. They initially sent me the prescription coverage card (reduced price I think with card?) Then I tried to get it covered thru hardship case as they do offer free coverage in some cases. They declined as they stated my insurance DOES cover Prolia - not thru prescriptions but thru medical claim. I'm still waiting to hear back from my Onc's office. I see him in about 10 days. Ugh.
Jaybied ~
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