ATTR-CM: helping a loved one manage multiple medications

Managing transthyretin amyloid cardiomyopathy (ATTR-CM) often requires a person to take multiple medications. If you are a caregiver for a person living with ATTR-CM, below are some strategies that can help you help your loved one manage a dosing schedule that involves multiple medications.

How ATTR-CM affects the heart

ATTR-CM is a rare condition that causes the heart muscle to thicken. The underlying causes are problems with a protein called transthyretin (TTR). These problems can occur due to inherited genetic mutations or they can be related to advancing age.

In people with ATTR-CM, TTR becomes structurally unstable and breaks apart. The pieces misfold into abnormal shapes, stick together, and form clumps called amyloid deposits.

Amyloid deposits can accumulate in different tissues, including cardiac muscle. This is what causes the heart muscle to thicken and become stiff. It can impair the heart’s ability to pump blood, leading to a variety of symptoms and complications. This includes heart failure, with symptoms such as shortness of breath, swelling/fluid buildup in the legs (edema), reduced capacity for physical activity, difficulty thinking, and coughing/wheezing. Arrythmias—such as heart palpitations, rapid heartbeat, and irregular heart rhythms—are also common.

Treatment for ATTR-CM

There is no cure for ATTR-CM, and treatment focuses on managing symptoms and complications, and slowing the progression of the disease.

Your loved one may be prescribed several medications to help meet these goals:

• Newer medications (gene silencers and gene stabilizers) that help slow or stop the formation of amyloid deposits, which helps slow the progression of the disease.
• Medications to manage heart failure, arrythmias, or other complications
• Medications for ATTR that affects other parts of the body, such as the nervous system or kidneys.
• Medications for any coexisting medical conditions, such as diabetes, hypertension, or other heart conditions, which are more common in older adults (the age group where ATTR-CM is most common).

Managing multiple medications

In order to get the best result from treatment, your loved one needs to take all medications as directed. This means taking every dose and taking every dose on time. This can sometimes be challenging when taking multiple medications. As a caregiver, this is an area where you can support your loved one.

The strategies below may help. You and your loved one can review this list together and decide which strategies work for you.

Have clear instructions and training

• Have clear instructions from the healthcare provider for taking each medication, including what times each medication needs to be taken and any other instructions (such as taking a medication with or without food).
• If you have any questions or concerns about a medication, ask your loved one’s healthcare provider. Your pharmacist is also a great source of information.

Stay organized

• For oral medications, consider using a pill organizer. This is a container that organizes pills into individual doses labeled with the days of the week. You or your loved one should set a reminder to refill the organizer at the same time each week.
• Write down the daily, weekly, and monthly medication schedule in detail. Keep this schedule in a place where it is easy to check. This can be useful if you are sharing caregiving responsibilities among several people.
• If a medication requires an injection, make sure the people who will be administering the medication have the proper training from the healthcare provider.
• Store all medications in the same place and keep that space organized.

Reminders and routines

• Set alarms and reminders on you and your loved one’s phones. Some pharmacy apps also allow you to set reminders.
• Have a backup reminder. For example, if using an alarm, also leave a note or some other visual reminder in a place where it will be difficult to miss.
• Make taking medications part of your loved one’s daily routine, such as breakfast or brushing their teeth.
• Add all appointments to calendars. This includes checkups with a healthcare provider as well as doses of medication that need to be administered with an injection at a healthcare provider’s office.

Plan ahead

• Plan for unplanned interruptions. Have doses of medications ready if your loved one will be out of the house and may not be home in time to take a medication.
• Plan ahead if your loved one is going to be traveling. Pack enough medication, and have copies of your loved one’s schedule, medical information, and emergency contacts.
• Also inform your healthcare provider about travel or anything that could conflict with scheduled appointments.

Last but not least, if your loved one is having difficulty taking medications for any reason, talk about it with their healthcare provider.