Diagnosing Amyloidosis continued...
A biopsy is needed to confirm a diagnosis of amyloidosis and determine the specific type of protein involved in the disease. The tissue sample for the biopsy may be taken from the abdominal fat pad, or sometimes the mouth, rectal, or other involved organs. It is not always necessary to biopsy the part of the body damaged by the amyloid deposits.
Genetic testing will be done if your health care provider suspects you have a type that is passed down through families. Treatment for hereditary amyloidosis is different than for other types of the disease.
Other blood, urine, and imaging tests will be done to check organ function.
There is no cure for amyloidosis. Your doctor will prescribe treatments to suppress the development of the amyloid-forming protein, and to 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 those with primary AL amyloidosis who have no more than two major organs damaged. Chemotherapy medicines alone are 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.
- Liver transplant may stop the disease in those with hereditary amyloidosis.
- A kidney or heart transplant may also be recommended.
Other treatments to help with symptoms may involve:
- Diuretic medicine to remove excess water from your body
- Thickeners to add to fluids to prevent choking in those who have swelling of the tongue
- Compression stockings to relieve swelling in the legs or feet
Diet modifications, especially for those with gastrointestinal amyloidosis
What to Expect
Amyloidosis can be deadly, especially if it affects your heart or kidneys. Early diagnosis and treatment is important and can help improve survival. Without treatment, many patients die within two years of diagnosis.
Researchers continue to question why some types of amyloid make people sick and how the formation of amyloid can be stopped. Studies to investigate new treatments are ongoing. If you have amyloidosis, consider asking your doctor if there are any clinical trials you can participate in, or search for one by visiting www.clinicaltrials.gov and typing in the search term "amyloidosis."