There’s currently no cure for amyloidosis, but many people can manage the condition with treatment. Available treatments may help keep amyloidosis from getting worse, reduce symptoms, improve quality of life, and protect organs from further damage. Some people can live for years with the disease under good control.
A cure means the disease is gone and isn’t expected to come back. Remission means signs of the disease have decreased or disappeared.
Remission may be partial, when some signs of disease remain, or complete, when tests find no signs of active disease. Remission may last a long time, but relapse can still happen.
If amyloidosis returns, your doctor may recommend the same treatment or a different one.
Modern treatments have improved the outlook for people with amyloidosis. Treatment depends on the type of amyloidosis and which organs are affected.
Treatment may help reduce the production of amyloid-forming proteins, improve symptoms, and lead to remission. In some cases, existing amyloid deposits may also decrease.
For most types of systemic amyloidosis, treatment aims for remission or long-term disease control rather than a cure. Regular follow-up is still important after treatment because the disease may return or progress.
The chances of remission and long-term disease control depend on the type of amyloidosis, which organs are affected, and how well treatment works.
Because treatments have improved, older survival estimates may not always reflect what people can expect today.
Immunoglobulin light-chain (AL) amyloidosis is one of the most common types. It isn’t usually considered curable, but treatment can lead to long periods of remission. People who respond well within the first six months tend to have a better outlook.
AL amyloidosis treatments target abnormal plasma cells that produce the proteins that form amyloid. Many of these treatments are also used for multiple myeloma because the two conditions have similarities. Options may include:
These treatments aren’t considered a cure, but newer therapies have greatly improved outcomes. Daratumumab-based regimens have changed AL amyloidosis treatment, helping slow organ damage and extend survival. When treatment stops the production of new amyloid-forming proteins, the body may also clear some existing deposits.
Recent findings show how much outcomes have improved:
Genetics can also influence treatment response. About half of people with AL amyloidosis have a genetic change called t(11;14).
This genetic change has been linked to weaker responses to some treatments, but testing for it may also help doctors choose treatment. People with t(11;14) may be more likely to reach complete remission after a stem cell transplant.
Serum amyloid A (AA) amyloidosis, also called secondary amyloidosis, isn’t typically considered curable, but treating the underlying condition can help control the disease and improve outcomes.
Treatment focuses on the condition causing inflammation, such as rheumatoid arthritis and inflammatory bowel disease. When inflammation is well controlled, treatment may:
Outlook varies from person to person. One large study found a median survival of about 11 years after diagnosis. Outlook can vary based on kidney function, organ damage, and how well the underlying inflammation is controlled.
Higher amounts of amyloid in the body are linked to a shorter life expectancy, while lowering levels of the proteins that form amyloid is associated with better outcomes. An early diagnosis may improve the chances of controlling AA amyloidosis before more organ damage develops.
Hereditary transthyretin (hATTR) amyloidosis can be caused by many different gene mutations (variants) in the TTR gene. The outlook for hATTR amyloidosis depends on factors such as the gene variant, age when symptoms start, organs affected, and treatment.
Other inherited forms may also have very different outcomes depending on the gene variant involved. For example, people with fibrinogen-related amyloidosis may live 15 years or longer, and some forms linked to gelsolin mutations (changes) may not shorten lifespan.
For hATTR amyloidosis, current treatments can help slow the disease but usually don’t cure it. Options include:
These treatments can slow disease progression rather than cure hereditary ATTR amyloidosis.
A liver transplant may be an option for some people with hATTR amyloidosis because the liver makes most TTR protein. A transplant can greatly reduce production of the variant TTR protein, but it is a major procedure, and not everyone is a candidate.
More than 100 gene variants are linked to hATTR amyloidosis, and outcomes can differ by variant. For example, people with the V30M variant have had better outcomes after liver transplantation.
Wild-type transthyretin (ATTR) amyloidosis affects the TTR protein without an inherited TTR gene variant. It most often affects the heart. It’s not currently considered curable, but treatment can help slow the disease and manage heart problems.
Treatment options may include:
Outlook depends largely on how much the heart has been affected. More severe heart failure is linked to a poorer outlook. Doctors may also check certain blood markers, which can rise when the heart muscle is damaged.
Researchers are studying new approaches that may control amyloidosis more completely:
These approaches are still being studied, so it isn’t yet known whether they could lead to a lasting cure.
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Houdy everyone. Hope everyone is staying strong! Still waiting on TTR & Nuclear tests for my ATTR. Can one have ATTRh and ATTRcm or Wild?
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Thank you for sharing this information! I was diagnosed with a year ago with AL Amyloidosis and am currently on a maintenance with Daratumumab because my production of Amyloid is almost back to… read more
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