Amyloidosis is when an abnormal protein called amyloid builds up in your tissues and organs. When it does, it affects their shape and how they work. Amyloidosis is a serious health problem that can lead to life-threatening organ failure.
Symptoms of Amyloidosis
Symptoms of amyloidosis are often subtle. They can also vary greatly depending on where the amyloid protein is collecting in the body. It is important to note that the symptoms described below may be due to a variety of health problems. Only your doctor can make a diagnosis of amyloidosis.
General symptoms of amyloidosis may include:
Changes in skin color
Severe fatigue
Feeling of fullness
Joint pain
Low red blood cell count (anemia)
Shortness of breath
Swelling of the tongue
Tingling and numbness in legs and feet
Weak hand grip
Severe weakness
Sudden weight loss
Cardiac Amyloidosis (Stiff Heart Syndrome)
This condition can cause less blood to flow to your heart muscle. Eventually, your heart will no longer be able to pump normally.
Some doctors also call cardiac amyloidosis “stiff heart syndrome.” Others say a stiff heart is actually a symptom of cardiac amyloidosis.
Either way, amyloid deposits in your heart can make the muscular walls of your heart stiff. They can also make your heart muscle weaker and affect the electrical rhythm of the heart. Stiff heart syndrome can be serious. It may lead to congestive heart failure if it's not successfully treated.
Who’s at risk? Cardiac amyloidosis is more common in men than in women. It’s also more likely to affect older people. People under 40 rarely get the condition.
You can inherit stiff heart syndrome. Other things that raise your chances of getting it are:
Having untreated high blood pressure
Being obese
Being over 60
Having gone through menopause
What are the symptoms? If amyloidosis affects your heart, some symptoms you might notice are:
Shortness of breath when you're doing light activity or lying down
An irregular heartbeat
Signs of heart failure, including swelling of the feet and ankles, weakness, fatigue, and nausea, among others
Amyloidosis Treatment
There is no cure for amyloidosis. Your doctor will prescribe treatments to slow the development of the amyloid protein and manage your symptoms. If amyloidosis is related to another condition, then treatment will include targeting that underlying condition.
Specific treatment depends on what type of amyloidosis you have and how many organs are affected.
High-dose chemotherapy with stem cell transplant can help remove the substance that leads to amyloid formation in some people with primary AL amyloidosis. Chemotherapy medicines alone may be used to treat other patients with primary AL amyloidosis.
Secondary (AA) amyloidosis is treated by controlling the underlying disorder and with powerful anti-inflammatory medicines called steroids, which fight inflammation.
A liver transplant may treat the disease if you have certain types of hereditary amyloidosis.
New therapies can slow the production of the abnormal protein TTR.
Your doctor might also recommend a kidney transplant.
Other treatments to help with symptoms include:
Diuretic medicine to remove extra water from your body
Thickeners to add to fluids to prevent choking if you have trouble swallowing
Compression stockings to relieve swelling in your legs or feet
Changes to what you eat, especially if you have gastrointestinal amyloidosis
Diagnosing Amyloidosis
A thorough physical exam and a detailed and accurate account of your medical history are crucial in helping your doctor diagnose amyloidosis.
Blood and urine tests can spot abnormal proteins. Depending on your symptoms, your doctor may also check your thyroid and liver.
Your doctor will do a biopsy to confirm a diagnosis of amyloidosis and know the specific type of protein you have. The tissue sample for the biopsy may be taken from your belly fat (the abdominal fat pad), bone marrow, or sometimes your mouth, rectum, or other organs. It's not always necessary to biopsy the part of the body damaged by the amyloid deposits.
Imaging tests can also help. They show the amount of damage to organs like your heart, liver, or spleen.
Your doctor will do a genetic test if they think you have a type that is passed down through families. Treatment for hereditary amyloidosis is different from treatment for other types of the disease.
Once you’re diagnosed, your doctor might check your heart with an echocardiogram or your liver and spleen with imaging tests.
Your Family, Our Responsibility !