Does your morning run leave you gasping for air? Do your legs look puffy? Are you so tired, you feel like you could collapse? Something’s not right.
Many different health conditions cause symptoms like these. But amyloidosis is one that you might never have heard of. And it’s one you don’t want to ignore. This rare, chronic disorder happens when the usually helpful proteins in your body get all twisted, clump together and build up in your organs. If left untreated, these protein clumps (amyloid deposits) can cause organs — like your heart, kidneys, liver or nerves — not to work right and could even take over your healthy organs completely.
Cleveland Clinic specialists have decades of experience pinpointing and treating amyloidosis. And we’re always researching new ways to help you manage this often misdiagnosed condition. Our providers use the latest technology and knowledge about this disorder to personalize your treatment for the best possible results.
Our experts have years of experience diagnosing and treating all types of amyloidosis. And Cleveland Clinic is officially recognized as a Center of Excellence by the Amyloid Research Consortium and the International Society of Amyloidosis.
Because amyloidosis can affect many parts of your body, your Cleveland Clinic care team will include healthcare providers from many different specialties. They’ll treat every aspect of your health affected by this complex disease. Meet our team.
Our robust amyloidosis research offers you access to the newest amyloidosis therapies. Your provider can let you know if you’re able to participate in any clinical trials.
If you’re not feeling great or have to travel for care, it can sometimes be tough getting to an in-person appointment. Our virtual visits let you meet one-on-one with your providers using a smartphone, tablet or computer. You can talk about your progress and concerns with your providers from the comfort and convenience of home.
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There are several types of amyloidosis, but three of the most common are:
Your first appointment will begin with a conversation. We’ll talk about how you’re feeling, what symptoms you have, when they started and how they’re affecting your life. We’ll also go over your medical history and ask if any family members have amyloidosis.
Then we’ll give you a physical exam and do blood and urine (pee) tests to look for abnormal protein levels. Depending on your symptoms and health history, your provider might also recommend a few other tests.
Bone marrow (the spongy center of your bones) is a good place to check for light chain (AL) amyloidosis. By testing your bone marrow, we can often figure out what protein has changed and what kind of amyloidosis you have. Your provider may do:
These tests take pictures of your insides to see if any of your organs or tissues are damaged:
These tests zero in on your heart and help us diagnose cardiac amyloidosis. They may include:
Your care team will include Cleveland Clinic specialists from many different areas, depending on the type of amyloidosis you have. These experts work together to make sure you get the right diagnosis and treatment as quickly as possible. Your team may include:
Our healthcare providers see patients at convenient locations throughout Northeast Ohio and Florida.
Since amyloidosis is a lifelong condition, your treatment plan will focus on stopping the proteins from building up in your organs so your symptoms go away for as long as possible. It’ll also focus on managing the condition long-term. Your treatments will depend on what kind of amyloidosis you have and how it’s affecting your body.
We specialize in treating AL amyloidosis with a combination of medications that destroy the cells that cause protein changes. You may receive:
The U.S. Food and Drug Administration (FDA) has approved several medications to treat ATTR amyloidosis. These medications can slow symptoms and stop proteins from clumping on your organs. Other medications can slow the production of mutated amyloid proteins in this kind of amyloidosis.
Chronic inflammatory and autoimmune diseases like rheumatoid arthritis and inflammatory bowel disease (IBD) can cause AA amyloidosis. Often, treating these other conditions can help ease your AA amyloidosis symptoms.
Sometimes, you may need more invasive treatments for your amyloidosis. Your care team will talk with you about different options they think will work best for you. These include:
If you have a rare condition like amyloidosis, it’s important to connect with a team of providers who have experience treating this complex condition. At Cleveland Clinic, we know managing amyloidosis can be physically, mentally and emotionally challenging. We’re here to guide you through every step with expertise and compassion — from diagnosis and treatment to ongoing follow-up and support.
Getting an appointment with Cleveland Clinic’s amyloidosis experts is easy. We’re here to help you get the care you need.
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