That's a frustrating situation, especially when you're trying to get the most effective treatment for your diagnosis. Let's break this down.
Diflunisal is not FDA-approved specifically for amyloidosis, but doctors do prescribe it "off-label" for ATTR amyloidosis. It works by stabilizing the TTR protein, similar to Show Full Answer
That's a frustrating situation, especially when you're trying to get the most effective treatment for your diagnosis. Let's break this down.
Diflunisal is not FDA-approved specifically for amyloidosis, but doctors do prescribe it "off-label" for ATTR amyloidosis. It works by stabilizing the TTR protein, similar to tafamidis, which helps prevent amyloid from building up further.
Here's what's important to know about diflunisal:
- It has shown real benefits in slowing disease progression, particularly in earlier stages
- Being at Stage 1 may actually work in your favor — starting treatment early generally leads to better outcomes
- It requires close monitoring because it can affect the stomach and kidneys
- Regular checkups and lab tests are typically needed while on this medication Regarding the staging confusion — a Grade 2 PYP scan indicates a moderate level of amyloid deposits in the heart, but staging (Stage 1, 2, or 3) is determined separately based on biomarkers like troponin and NT-proBNP levels. So it's entirely possible to have a Grade 2 PYP scan and still be classified as Stage 1. Stage 1 means your heart function biomarkers are still in a relatively good range, which is actually encouraging news.
It would be worth asking your cardiologist to walk through exactly which biomarkers placed you at Stage 1, so the picture feels less confusing. And if tafamidis remains the preferred option, it may be worth asking about an appeal with Kaiser — many people do successfully appeal insurance denials with supporting documentation from their specialist.
June 18
But as I understand it, the PYP scan has grade level levels of zero, one, two and three. Since my grade was two and grade three being the most severe, I am just one number away from that. That doesn't seem like Stage one level Amyloidosis
June 18
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