Polycystic Kidney Disease Treatment Options in Minnesota Explained

ANC Team

-

September 10, 2025

Polycystic Kidney Disease Treatment Options in Minnesota Explained

Polycystic kidney disease (PKD) has no cure yet, but treatment can slow kidney damage and ease its complications. The main options are careful blood pressure control, a medicine called tolvaptan for some adults whose disease is getting worse quickly, care for pain and infections, and dialysis or a kidney transplant if the kidneys fail.

Key Takeaways

PKD is an inherited disease in which many fluid-filled cysts grow in the kidneys, enlarge them and slowly reduce how well they work.
Doctors diagnose PKD with imaging and sometimes genetic testing, then track kidney size, kidney function and blood pressure.
Blood pressure control, often with an ACE inhibitor or an ARB, is a core part of treatment.
Tolvaptan can slow kidney function decline in some adults with ADPKD, but it requires regular liver blood tests.
A sudden, severe headache in someone with PKD is an emergency: call 911.

What Is Polycystic Kidney Disease?

PKD is a genetic disorder that causes many fluid-filled cysts to grow in the kidneys. Over time the cysts can make the kidneys much larger, lower kidney function and lead to kidney failure. PKD can also cause high blood pressure, liver cysts and problems with blood vessels in the brain and heart.

There are two main types:

Autosomal dominant PKD (ADPKD) accounts for about 90% of cases. It affects about 1 in 400 to 1,000 people, is usually diagnosed between ages 30 and 50, and can be inherited from just one parent.
Autosomal recessive PKD (ARPKD) is rare. A child must inherit the gene change from both parents, and signs often appear in the womb or soon after birth.

How Is PKD Diagnosed and Monitored?

Ultrasound is usually the first test. CT and MRI scans give more detailed pictures and can find smaller cysts. If imaging is unclear, your doctor may suggest genetic testing on a blood or saliva sample.

After diagnosis, checkups usually track three things:

Kidney size: MRI or CT can measure total kidney volume, which, adjusted for height and age, helps predict how quickly kidney function may decline.
Kidney function: blood and urine tests such as creatinine and eGFR. This guide explains what your kidney function test results mean.
Blood pressure: measured at visits and often at home.

The pace varies. People with a change in the PKD1 gene, the most common type, usually reach kidney failure sooner than those with a PKD2 change.

Which Treatments Can Slow PKD?

Blood pressure control comes first. High blood pressure is the most common sign of PKD, and it damages the kidneys further. Doctors usually start with an ACE inhibitor or an angiotensin receptor blocker (ARB), medicines whose names end in -pril or -sartan. Goals differ by age and kidney function, so ask your nephrologist for your target.

For some adults with ADPKD, a medicine called tolvaptan (brand name Jynarque) is another option. The FDA approved it in April 2018 to help slow kidney function decline in adults at risk of rapidly progressing ADPKD. It makes the body release more water as urine and slows cyst growth, so thirst and frequent urination are common. Because it can cause serious liver injury, it is available only through a restricted safety program, with regular liver blood tests before and during treatment. It is not used during pregnancy or breastfeeding.

Ask your nephrologist whether tolvaptan fits your situation. Supplements should not replace standard treatment, so check with your care team before taking any.

How Are Pain and Other Complications Treated?

Back or side pain is common in ADPKD. It can come from growing kidney or liver cysts, a cyst that bleeds or bursts, an infection or a kidney stone, so your doctor will look for the cause first. Ask before taking any over-the-counter pain reliever, because some can harm your kidneys. Draining one or a few large cysts may help, and surgery to shrink cysts can ease pain for a while, but it does not slow the disease.

Other problems are treated as they come up:

Urinary tract infections and infected kidney cysts need prompt antibiotics, sometimes for several weeks.
Kidney stones, which some people with ADPKD get, can block urine flow and cause pain.
Liver cysts are the most common problem outside the kidneys. Most cause no symptoms.
Brain aneurysms, bulges in a blood vessel wall, are more common with ADPKD, though most never burst. Screening is recommended if relatives have had an aneurysm or bleeding in the brain.

Do Diet, Fluids and Daily Habits Make a Difference?

No diet is known to prevent cysts, but some habits help protect your kidneys. Limiting sodium helps control blood pressure, smaller portions of high-quality protein can help protect the kidneys, and as kidney function falls you may need to limit phosphorus and potassium. A kidney dietitian can tailor this to you, and our guide to managing potassium and phosphorus explains the basics.

Staying hydrated with the right amount of fluid may help slow PKD, and the National Kidney Foundation suggests plain water spread through the day and avoiding caffeine. The right amount depends on your kidney function and medicines, since some medicines make extra water unsafe, so ask your nephrologist. Also:

Be active for 30 minutes or more on most days, but ask before contact sports, since a blow to the back or sides can make cysts burst.
Do not smoke. It raises blood pressure and aneurysm risk.
Aim for 7 to 8 hours of sleep and a healthy weight.

What Happens If PKD Leads to Kidney Failure?

More than half of people with ADPKD reach kidney failure by age 70, and then dialysis or a kidney transplant is needed. Hemodialysis and peritoneal dialysis are both options, although very large kidneys or liver call for extra caution with peritoneal dialysis. ANC’s guide to understanding dialysis walks through the choices.

For ADPKD, a kidney transplant is the preferred treatment for kidney failure, ideally from a living donor and before dialysis begins. Your own kidneys are usually left in place. A relative who offers to donate will be checked for PKD first. Learn more about how living and deceased donor transplants differ.

Should Your Family Be Tested for PKD?

With ADPKD, each child of an affected parent has a 50% chance of inheriting it. With ARPKD, when both parents carry the gene, each child has a 25% chance. In a small number of cases the gene change happens on its own, with no family history.

Testing has benefits and drawbacks, so guidelines recommend counseling before and after imaging or genetic tests. A genetic counselor can help your family decide, explain results and talk through family planning. For children, testing is a shared decision made with a pediatric kidney specialist, and a normal ultrasound in a young child does not rule ADPKD out.

When Should You Seek Care for PKD?

Call 911 or go to the emergency room if you have:

A sudden, severe headache that peaks within seconds to a minute, which can signal a bleeding brain aneurysm

Contact your doctor right away if you have:

Fever with new pain in your side, back or belly, which can mean a cyst infection
Blood in your urine
While taking tolvaptan: yellow skin or eyes, dark urine, or pain in the upper right belly

Make an appointment if:

PKD runs in your family, even without symptoms
Your blood pressure readings are high
Back or side pain or headaches keep coming back
You are planning a pregnancy

Frequently Asked Questions

Can PKD Be Cured?

Not yet. No treatment can stop cysts from forming, but treatment can reduce complications, which can help you live longer.

Will Everyone With PKD Need Dialysis?

Not necessarily. Many people with ADPKD reach kidney failure at some point, but the timing varies widely, and some get a transplant before they ever need dialysis.

Can Women With PKD Have a Healthy Pregnancy?

Most women with PKD have normal pregnancies, but high blood pressure and reduced kidney function raise the risk of preeclampsia. Talk with your nephrologist before trying to conceive, because some PKD medicines must be stopped first.

Can I Donate a Kidney If PKD Runs in My Family?

Possibly, but the transplant team must first rule out PKD in you. Genetic testing is especially useful for younger relatives, whose scans may not show cysts yet.

Is PKD Expensive to Manage?

It can be, especially if insurance does not cover some costs. Financial help may be available from federal programs and other sources, so ask your care team.

Talk to ANC About Polycystic Kidney Disease

ANC treats polycystic kidney disease and also cares for people approaching or on dialysis and before and after a kidney transplant. The main office is in Maplewood, and other clinic, hospital and dialysis locations are listed on ANC’s locations page. In most cases you need a referral from your primary care doctor, depending on your insurance plan: Contact ANC or call 651-772-6251 to ask about an appointment.

Sources

Medical Disclaimer

This article is for general educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider with questions about your specific care and treatment options.