Autosomal Dominant Polycystic Kidney Disease: Causes, Symptoms, and Treatment
Medically reviewed by Achuta Uppu, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Autosomal Dominant Polycystic Kidney Disease?
A nephrologist, a kidney doctor, usually manages this disease. Your primary care doctor helps with blood pressure and overall care. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is autosomal dominant polycystic kidney disease?
Autosomal dominant polycystic kidney disease (ADPKD) is the most common form of polycystic kidney disease, a condition in which fluid-filled sacs called cysts grow in the kidneys. It affects 1 in every 400 to 1,000 people. It is the most common kidney disorder passed down through families. It is often diagnosed between ages 30 and 50, so it is sometimes called adult PKD.
Symptoms
In many cases, ADPKD causes no signs until cysts reach about a half inch in size. The most common symptoms are pain in the back and sides, between the ribs and hips, and headaches. The pain can be short term or ongoing, mild or severe. Blood in the urine, called hematuria, may also be a sign. Most people with ADPKD have pain, high blood pressure, and kidney failure at some point in their lives.
Causes and who gets it
ADPKD is caused by gene changes passed down through families. Autosomal dominant means you can get the disease from only one parent. Most people with ADPKD have a defect in the PKD1 gene. About 1 in 6 or 1 in 7 have a defective PKD2 gene. People with PKD1 tend to be diagnosed sooner and progress to kidney failure faster. Providers usually diagnose ADPKD between ages 30 and 50.
How doctors diagnose it
Providers diagnose ADPKD using imaging tests and genetic testing, along with your age, family history, and how many cysts you have. Ultrasound uses safe sound waves to make images that can show kidney cysts. CT scans use x-rays and can show more detail. MRI uses radio waves and magnets to measure kidney and cyst size and track growth. A geneticist, an expert in inherited diseases, can test a blood or saliva sample for the gene changes.
Treatment
There is no cure yet for ADPKD, but treatment can reduce complications. A medicine called tolvaptan can sometimes be used to slow the growth of cysts, so ask your kidney doctor if it fits you. For pain, acetaminophen is the painkiller to try first. Painkillers called NSAIDs, such as ibuprofen, are usually avoided because they can harm kidney function. Always talk with a provider before taking any over-the-counter medicine, because some may harm your kidneys. Controlling blood pressure can slow the effects of ADPKD. Providers may recommend ACE inhibitors or ARBs, which are blood pressure medicines. If kidneys fail, treatment is dialysis, which filters the blood, or a kidney transplant. Regular visits with a health care team help limit kidney problems.
When to see a doctor
See a provider before symptoms start if ADPKD runs in your family. Get care right away for blood in the urine. Tell your provider about headaches that will not go away, because people with PKD who have headaches should be tested for brain aneurysms. Call 911 or go to the emergency room for a severe headache or one that feels different from your other headaches. Brain aneurysms, which are bulges in blood vessel walls, can occur in ADPKD. Large brain aneurysms are life threatening and need immediate medical treatment.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either can check blood pressure and kidney function over time and refer you to a kidney specialist. They can also coordinate long-term care.
Common questions
How common is ADPKD?
It affects 1 in every 400 to 1,000 people and is the most common kidney disorder passed down through families.
Can children get it?
Yes. A child can get the disease from only one parent, but providers usually diagnose ADPKD between ages 30 and 50.
What complications can happen?
Most people have pain, high blood pressure, and kidney failure at some point. Liver cysts, kidney stones, urinary tract infections, and brain aneurysms can also occur.
Is there a cure?
No, but treatment can reduce complications, which can help you live longer. Controlling blood pressure helps delay kidney damage.
When is dialysis needed?
When the kidneys fail. People with kidney failure must have dialysis or a kidney transplant. More than half of people with ADPKD progress to kidney failure by age 70.
Sources
- National Institute of Diabetes and Digestive and Kidney Diseases - Autosomal Dominant Polycystic Kidney Disease
- MedlinePlus - Polycystic kidney disease
- NHS - Autosomal dominant polycystic kidney disease: Treatment
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
