Managing TRANSTHYRETIN (TTR) AMYLOIDOSIS

TTR amyloidosis is a progressive condition caused by misfolded transthyretin proteins depositing in organs—most commonly the heart and nerves. There are two main types:

  • Hereditary ATTR (hATTR): Caused by a genetic mutation in the TTR gene. It often affects the heart, nerves, and kidneys.

  • Wild-type ATTR (wtATTR): A non-genetic, age-related form that primarily affects the heart and sometimes the nerves.


General Tips for Both Types

  • Stay Informed: Understanding your specific diagnosis helps you make empowered decisions.

  • Track Symptoms: Keep a journal of fatigue, swelling, numbness, or shortness of breath to share with your care team.

  • Medication Adherence: Therapies like Amvuttra can help stabilize or reduce TTR protein production—take them consistently.

  • Heart Health: Follow a low-sodium diet, monitor fluid intake, and use diuretics as directed to manage heart failure symptoms.

  • Neuropathy Support: If nerve involvement is present, ask about medications for pain and mobility aids.

  • Genetic Counseling: For hATTR, encourage family members to get screened.

  • Regular Monitoring: Schedule routine cardiac imaging, neurologic assessments, and lab tests to track disease progression.


Tips for Hereditary ATTR (hATTR)

  • Family Screening: Relatives may carry the same mutation—early detection can improve outcomes.

  • RNA-based Therapies: Gene-silencing treatments like Amvuttra can reduce TTR production—ask your provider if it’s appropriate.

  • Liver Transplant Consideration: In rare cases, this may be an option to halt mutant TTR production.


Tips for Wild-Type ATTR (wtATTR)

  • Age-Related Monitoring: wtATTR often affects older adults—watch for subtle signs of heart failure or arrhythmias.

  • TTR Stabilizers: Commonly used to slow progression by stabilizing the TTR protein.

  • Fall Prevention: If balance or strength is affected, consider physical therapy and home safety evaluations.


Lifestyle & Emotional Wellbeing

  • Stay Active: Gentle exercise like walking or swimming can support circulation and mood.

  • Mental Health: Chronic illness can be isolating—seek support groups or counseling.

  • Care Coordination: Work with a multidisciplinary team—cardiologists, neurologists, geneticists, and pharmacists.


Questions to Ask Your Provider

  • What type of TTR amyloidosis do I have?

  • What organs are affected in my case?

  • Which medications are best for my type?

  • Should my family be tested?

  • What symptoms should prompt urgent care?

 

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