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kenneth_jordan2026-04-18

I was recently diagnosed with primary hyperoxaluria type 1 (PH1) and have just started treatment with Rivfloza 128mg/0.8ml Pf Syr Inj. I'm hoping to hear from others who have experience with this medication. How has it been working for you? Have you noticed any improvements in your symptoms? I'm particularly interested in hearing about any side effects you've experienced and how you've managed them. I'm also curious about the long-term outlook for those on this treatment. Has anyone had any issues with insurance coverage or accessing the medication?

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last active 2d ago
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Comments (4)

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abigail_day6d ago

I had a similar issue, but my doctor's office was incredibly helpful. They have a financial assistance team that helped me with the paperwork and negotiations with my insurance company. I ended up getting my medication covered. Don't give up—ask your doctor's office for support, if possible.

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wayne_silva6d ago

Rivfloza has been a game-changer for me. I've seen a significant reduction in my kidney stone episodes since starting the treatment. The injection site can get a bit sore, but it's manageable. Make sure to rotate your injection sites to minimize discomfort. Also, keep an eye out for any signs of allergic reactions, though I haven't had any issues so far.

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ethan_ferguson5d ago

Has anyone had any issues with insurance coverage for Rivfloza? My insurance is giving me a hard time, and I'm not sure how to navigate the process.

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philip_knight5d ago

Thank goodness for this medication. Before it was approved, PH1 patients had no easy options to control oxalate. This is the best thing that could have happened to the PH1 community.