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Deep Dive

Polycystic kidney disease (PKD) is a genetic condition in which fluid-filled cysts grow in the kidneys over time. These cysts cause the kidneys to become larger and gradually lose their ability to work properly.

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People with PKD may experience symptoms like high blood pressure, pain in the back or sides, frequent urinary tract infections, kidney stones, and fatigue—though some people have few symptoms for many years. As the disease progresses, PKD can lead to chronic kidney disease and, in some cases, kidney failure.

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PKD affects each person differently. With regular medical care, healthy lifestyle choices, and support, many people with PKD continue to live full, active lives.

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What Causes PKD?

​A change (mutation) in your genes causes PKD. Genes are part of your cells that contain DNA and tell your cells what to do. DNA is found inside every cell in our body and carries information that gets passed from one generation to the next. Almost always, PKD is passed down from an affected parent or from both parents who might be carriers (not have PKD) to their child. New mutations rarely occur in an individual without a family history of PKD leading to disease in them. 

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What are the symptoms of ADPKD?

Symptoms usually start when you are between 30 and 50 years old. This can vary depending on how many cysts you have and how big they are. Symptoms include:

  • Pain in your back and sides

  • Headaches

  • Blood in your urine (pee)

  • High blood pressure

  • UTIs (urinary tract infections)

  • Kidney stones

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Treatment

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​There's no cure for Polycystic Kidney Disease (PKD), but treatment focuses on slowing progression, managing symptoms, and addressing complications like high blood pressure (with ACE inhibitors/ARBs), pain (medications, cyst drainage, or embolization), and infections (antibiotics)

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  • The medicine tolvaptan (Jynarque, Samsca) may be used for adults at risk of ADPKD that's getting worse fast. Tolvaptan is a pill that you swallow that slows how fast kidney cysts grow. It also slows the decline in how well your kidneys work.

    Tolvaptan carries a risk of serious liver injury. And it can interact with other medicines you take.

  • High blood pressure. Keeping high blood pressure under control can slow the disease and kidney damage.

  • Eating a low-sodium, low-fat diet that's moderate in protein and calories and drinking more fluids may help control blood pressure.

    Other helpful lifestyle changes include not smoking,

  • Moving more and easing stress. Smoking can greatly harm the kidneys. It also can speed up the start of kidney failure.

  • To help your kidneys stay as healthy as possible for as long as possible, experts suggest being at a healthy weight and body mass index.

  • Drinking water and fluids throughout the day may help slow the growth of kidney cysts. This could slow the loss of kidney function. Eating a low-salt diet with less protein might let kidney cysts respond better to more fluids..

  • Aneurysms. If you have polycystic kidney disease and a family history of brain aneurysms that burst, your healthcare team may want to do regular screenings for brain aneurysms.

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