Has anyone stopped Prolia without taking another med?
I was set up to get Reclast, but I am without insurance for several months and I'm very disappointed that I cannot get a return call from my provider with an estimate of what this infusion will cost me. I tried for days, and nothing, so I cancelled the appointment. I went for the blood test that was ordered and that looks fine.
The 19th will be 6 months since my last shot. I think I was on Prolia for 3 years. Just how high is my risk of experiencing rapid bone loss? I haven't had any fractures from having osteoporosis. I no longer take the AI. Should mention I also got screwed out of a Dexa scan due to insurance being cancelled.
Just looking for any insight on how to proceed. Risk doing nothing or keep pushing to get someone to let me know how much my self pay cost will be. I've spent many hours figuring out what I need for my care until I can get on Medicare. Seems my plan is not starting out to good.
From what I've looked up the costs vary greatly. In the fall I was quoted around $500 for this which is very doable, however I was told I need to get the estimate within 30 days of the appt.
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Hi @ctmbsikia! ,
Ugh, we’re really sorry you’re dealing with this. The insurance gap, the lack of returned calls, and having to cancel an appointment you were trying hard to keep. It's so frustrating.
When you’re able to connect with your provider, some questions that might help move things forward are:
- What is my individual risk if there’s a delay between Prolia and Reclast (if you end up getting that)?
- Are there lower-cost or self-pay options for the infusion?
- Is there someone who handles cost estimates specifically who can help get clearer answers.
- Is there anything I should be monitoring or doing in the meantime?
It really sounds like you’ve been doing a lot of work to hold things together until Medicare starts, and it’s SOOOO frustrating when the system doesn’t meet you halfway. We hope others here will share what they’ve learned navigating insurance gaps and infusion costs, because you’re definitely not alone in this.
Please keep us posted, and don’t hesitate to reach out. We’re glad you brought this up, but sorry for what you're needing to navigate!
💙
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I did stop Prolia after 6 years with no Reclast infusion that followed. I was stopping letrozole after 7.5 years for a dental surgery, and the recommendation for at least one Reclast infusion had not yet come to be a common occurrence. Are you looking for just one infusion of Reclast to bridge you to stopping any bone building meds? Even though I was osteopenic prior to breast cancer - likely due to an oopherectomy at 45 - my rapid bone loss was directly linked to taking an AI. I did not experience any issues or loss of bone after stopping Prolia. I was an "exceptional responder" to Prolia and had gained more bone density than any of the other patients my oncologist had prescribed it for. At the time I stopped I was in a normal range and have remained at the crossroad between normal and osteopenia since then and it has been about 8 years since I stopped. I have had several DEXA scans at the regular two-year intervals, showing I am maintaining. I have several thoughts - is it possible to use a pharmacy discount program? Does your oncology office have any grants available? Could you take a short course of oral bisphosphanate to bridge you - that is likely less expensive. Also, DEXA scans at the cash price are not prohibitively expensive - average between $100-$300 depending on where you live and where you go to get one. If you go that route you can shop around if there are multiple places to get one nearby. I have a friend who needed one before age 60 and her insurance wouldn't cover, she paid $125.
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My sister came off 7 years of Prolia by taking a six month course of alendronate sodium (generic Fosamax.) It costs less than $15 for twelve weeks (1 tablet weekly) with a goodrx coupon. You can take it until your Medicare kicks in and covers a DEXA scan. An independent imaging center would probably give you the best price for a self pay DEXA if you want to go that route. Good luck covering the insurance gap.
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Thank you for the responses! After I posted I received the estimate and it is discounted greatly ($370). I called to re-schedule, and I tried my best to walk the gal thru what I need (just the treatment-no Dr visit) but she still put a note out to the team. They confirmed and now just waiting for scheduling to call back with a time and location.
So, I'm hopeful I can get this behind me soon and without any side effects. I had no issues with Prolia at all. Glad I can come off of it safely now.
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