I was told by a amyloidosis expert that treatment was not an option because of the cost of the meds. Only when it gets to a major organ will meds be an option.
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Is there treatment available before wild-type ATTR affects major organs?
Wild-type ATTR typically affects the heart first, and symptoms like carpal tunnel syndrome in both hands can actually be early warning signs that appear years before heart involvement becomes noticeable. Unfortunately, wild-type ATTR is a systemic Show Full Answer
Is there treatment available before wild-type ATTR affects major organs?
Wild-type ATTR typically affects the heart first, and symptoms like carpal tunnel syndrome in both hands can actually be early warning signs that appear years before heart involvement becomes noticeable. Unfortunately, wild-type ATTR is a systemic disease, meaning it may already be affecting other organs even when hand symptoms are the most obvious.
The good news is that FDA-approved treatments are available for wild-type ATTR. Tafamidis (Vyndamax) is a TTR stabilizer that helps prevent the protein from breaking apart and forming harmful deposits. Another medication, acoramidis (Attruby), may also be an option. These treatments work by stabilizing the TTR protein directly, which is important since wild-type ATTR isn't caused by a genetic mutation.
Starting treatment early—before severe organ damage occurs—can lead to better outcomes. It's crucial to work with your healthcare team to monitor your heart and other organs through imaging and testing, even if you're not experiencing symptoms beyond your hands yet.
Talk to your doctor about whether starting treatment now makes sense for your situation. Early intervention can help slow disease progression and protect your organs.
April 14
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