Amyloidosis is often overlooked because the signs and symptoms can mimic those of more-common diseases. Diagnosis as early as possible can help prevent further organ damage. Precise diagnosis is important because treatment varies greatly, depending on your specific condition.
Your doctor is likely to start with a thorough medical history and physical exam. After that, you may have:
- Laboratory tests. Your blood and urine may be analyzed for abnormal protein that can indicate amyloidosis. Depending on your signs and symptoms, you may also have thyroid and liver function tests.
- Biopsy. A tissue sample may be taken and checked for signs of amyloidosis. The biopsy may be taken from your abdominal fat, bone marrow, or an organ such as your liver or kidney. Tissue analysis can help determine the type of amyloid deposit.
- Imaging tests. Images of the organs affected by amyloidosis can help establish the extent of your disease. Echocardiogram may be used to assess the size and functioning of your heart. Other imaging tests can evaluate the extent of amyloidosis in your liver or spleen.
There's no cure for amyloidosis. But treatment can help manage signs and symptoms and limit further production of amyloid protein. Specific treatments depend on the type of amyloidosis and target the source of the amyloid production.
AL amyloidosis. Many of the same chemotherapy medications that treat multiple myeloma are used in AL amyloidosis to stop the growth of abnormal cells that produce amyloid.
Autologous blood stem cell transplant (ASCT) offers an additional treatment option in some cases. This procedure involves collecting your own stem cells from your blood and storing them for a short time while you have high-dose chemotherapy. The stem cells are then returned to your body via a vein.
ASCT is most appropriate for people whose disease isn't advanced and whose heart isn't greatly affected.
- AA amyloidosis. Treatments target the underlying condition — for example, an anti-inflammatory medication to treat rheumatoid arthritis.
- Hereditary amyloidosis. Liver transplantation may be an option because the protein that causes this form of amyloidosis is made in the liver.
- Dialysis-related amyloidosis. Treatments include changing your mode of dialysis or having a kidney transplant.
To manage ongoing signs and symptoms of amyloidosis, your doctor also may recommend:
- Pain medication
- Fluid retention medication (diuretic) and a low-salt diet
- Blood-thinning medication
- Medication to control your heart rate
Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this disease.
Lifestyle and home remedies
These tips can help you live with amyloidosis:
- Pace yourself. If you feel short of breath, take a break. You'll need to avoid strenuous activities, but you may be able to continue normal daily activities, such as going to work. Talk to your doctor about an appropriate level of activity for you.
- Eat a balanced diet. Good nutrition is important to provide your body with adequate energy. Follow a low-salt diet if your doctor recommends it.
Coping and support
A diagnosis of amyloidosis can be extremely challenging. Here are some suggestions that may make dealing with amyloidosis easier:
- Find someone to talk with. You may feel comfortable discussing your feelings with a friend or family member, or you might prefer meeting with a formal support group.
- Set reasonable goals. Having goals helps you feel in control and can give you a sense of purpose. Choose goals you can reach.
Preparing for your appointment
You may be referred to a doctor who specializes in blood disorders (hematologist).
What you can do
- Write down your symptoms, including any that may seem unrelated to the reason why you scheduled the appointment.
- Make a list of all your medications, vitamins and supplements.
- Write down your key medical information, including other conditions.
- Write down key personal information, including any recent changes or stressors in your life.
- Write down questions to ask your doctor.
- Ask a relative or friend to accompany you, to help you remember what the doctor says.
Questions to ask your doctor
- What's the most likely cause of my symptoms?
- What type of amyloidosis do I have?
- What organs are affected?
- What stage am I?
- What kinds of tests do I need?
- What kind of treatments do I need?
- Am I at risk of long-term complications?
- What types of side effects can I expect from treatment?
- Do I need to follow any dietary or activity restrictions?
- I have another health condition. How can I best manage them together?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may provide time to go over points you want to spend more time on. You may be asked:
- When did you first begin experiencing symptoms? How severe are they, and are they continuous or occasional?
- Does anything seem to make your symptoms better or worse?
- How is your appetite? Have you recently lost weight without trying?
- Have you experienced any leg swelling?
- Have you experienced shortness of breath?
- Are you able to work and perform normal daily tasks? Are you often tired?
- Have you noticed that you bruise easily?
- Has anyone in your family ever been diagnosed with amyloidosis?
Amyloidosis care at Mayo Clinic
July 07, 2017
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