Diagnosed With ATTR-CM: What Should I Do Now?

• Shortness of breath
• Bloated stomach
• Confusion
• Coughing or wheezing
• Fatigue
• Heart palpitations

ATTR-CM can also lead to other conditions, such as carpal tunnel syndrome and neuropathy.

• acoramidis (Attruby)
• tafamidis (Vyndamax, Vyndaqel)
• vutrisiran (Amvuttra)

“All three have shown tremendous efficacy in greatly slowing disease progression,” Dr. Witteles says.

A few day-to-day habits can help you live a healthier life with ATTR-CM. It’s also wise to talk to your doctor before making any significant lifestyle or diet changes.

• Scale back on salt. Reducing sodium can help with the fluid retention you may experience with ATTR-CM, decreasing the need for diuretics, Witteles says.
• Exercise and stay active. Even if you’re dealing with shortness of breath or fatigue from ATTR-CM, daily walking and exercise can help you generally feel better.

  [1]

  Witteles advises talking to your doctor or physical therapist about exercise goals, what’s safe to do, and whether your exercise should be supervised.
• Eat a healthy diet. Maintaining a heart-healthy diet is particularly important if you’re diagnosed with ATTR-CM. That means eating many fruits and vegetables, choosing lean animal or plant-based proteins, opting for low-fat dairy options, and selecting minimally processed foods.

  [1]

  Malnutrition also can occur with ATTR-CM, so talk to your doctor about ensuring that your dietary choices are right for your situation.

  [11]

• Take care of your mental health. Mental health disorders such as depression and anxiety may accompany heart disease, so speak to your doctor for support and resources.

  [12]

  It can also be helpful to connect with other people with ATTR-CM through support groups, be it online or in person.

How often you visit your doctor will depend on the severity of the disease, how stable it is, and any associated issues, Witteles says.

“For a patient who has earlier stage disease and is quite stable, doctor visits may be annual,” he says. “For other patients who are struggling with fluid retention or arrhythmias, (visits) might be every month.”

Questions to Ask Your Doctor

• Should I get genetic testing to determine if I have hereditary ATTR-CM?
• How quickly might my ATTR-CM progress?
• What are my options for rehabilitation?
• What dietary restrictions should I know about?
• What behavioral health, psychology, or psychiatry referrals do you recommend?

ATTR-CM is a progressive disease, but it typically does not have an immediate onset.

“If somebody has urgent symptoms, it’s not because suddenly there’s a whole lot of new amyloid deposition,” Witteles says. “It’s because they have had something that has acutely worsened — for example, congestive heart failure or an arrhythmia.”

• Chest pain
• Fainting or extreme weakness
• Irregular or rapid heartbeat with shortness of breath, fainting, or chest pain
• Sudden, severe shortness of breath and coughing with white or foamy pink mucus

If you’re diagnosed with ATTR-CM, your typical care team will include your primary care physician, a cardiologist, and possibly other experts such as a physical therapist or dietitian, Witteles says. If you have hereditary ATTR-CM, a genetic counselor can also be helpful — and if your nerves are affected, a neurologist can provide expertise.

Your primary care physician can be the first point of contact for heart health and to evaluate your overall health and lifestyle. A cardiologist typically conducts more specialized testing and care.

Although you should always start by seeking support from your doctor, several organizations and resources also are available for patients and ATTR-CM caregivers.

“One of the best sources of support is other patients who are walking their same path,” says Paula Schmitt, the Georgia-based executive director of Amyloidosis Support Groups, an organization that provides resources to people with amyloidosis. “Having that community support helps relieve the fears and anxiety that can come with this diagnosis.”

Organizations that support ATTR-CM patients include:

• Amyloidosis Support Groups Offers in-person support group meetings in more than 30 cities, along with Zoom webinars and other resources.
• Amyloidosis Foundation Hosts regular webinars on topics such as clinical trials and coping with ATTR-CM challenges, plus provides resources for veterans.
• Amyloidosis Research Consortium Supports the development of new treatments, educates physicians on diagnoses, and empowers patients with support and education.

• ATTR-CM is a progressive heart disease with no cure. It can have a significant impact on your independence and quality of life, but early diagnosis and treatment can help maximize your ability to maintain your health.
• Treatment for ATTR-CM may include oral and injected medications, as well as other medications that can address symptoms such as fluid retention.
• Lifestyle changes such as eating a healthy low-sodium diet, exercising, and taking care of your mental health can help you maintain your health with ATTR-CM.
• Healthcare professionals and patient support groups can provide valuable resources and community connection, which may ease some of the emotional challenges of living with ATTR-CM.