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Living with amyloidosis

Living with amyloidosis means learning to manage how amyloidosis affects your life. The type of protein that makes amyloids and where in your body the amyloids rebuild up affect what happens in your body. So, your symptoms are unique to you. Your treatment and possible side effects are, too.

Living with amyloidosis is more than managing symptoms and treatment. You may also feel depressed, anxious, uncertain, confused, and overwhelmed. Because amyloidosis is rare, it’s likely that you don’t know anyone with the condition. You may feel alone. But there are things you can do to help you live your best life and manage your specific stresses. Learn what works for you.

Here are a few tips:

  • Learn as much as you can about the type of amyloidosis you have. Learn what parts of your body are affected and what you can do to manage your symptoms. For example:
    • If amyloids are building up in your heart or kidneys, you may need to follow a low-salt diet. This means learning to read and understand the Nutrition Facts section of food labels, learning how much salt is in certain foods, and not eating more salt than is recommended for you.
    • If amyloids have affected your nerves, keep track of your symptoms.  Call your doctor if you have any new symptoms or your symptoms get worse. Your doctor may order medications that may help treat your symptoms.
  • Follow your treatment plan and stay on track with your medications. Some of the damage that happens from the buildup of amyloids won’t get better. So, it’s important to stick to your treatment plan to help limit the damage.
  • Pace yourself. Listen to your body. Be active when you can and rest when you need to.
  • Eat a healthy diet.
  • Know who you can trust to be part of your support system. Ask for help. Know that it is okay to say “no”.
  • Reach out for professional help as you need it.
  • Join a support group. This may be online, in person or through social media. Talking with others living with amyloidosis may give you some emotional support. It’s also a great way to get and share ideas with others for getting through the day and managing your symptoms and therapies.

Here are some resources to help you manage your day to day.

The more you know about your amyloidosis, the easier it is to play an active role in your treatment. This is an important part of successfully treating and managing your condition. Your CVS Specialty CareTeam is available to answer your questions and help with side effects. They can also provide you with the information you need to effectively manage your condition. If you have questions or want to learn more, talk to your doctor or your CareTeam at 1-800-237-2767, M-F 8:00 am – 8:00 pm ET.

This information is not a substitute for medical advice or treatment. Talk to your doctor or health care provider about your medical condition and prior to starting any new treatment. CVS Specialty assumes no liability whatsoever for the information provided or for any diagnosis or treatment made as a result.