Learn about PKD
Treatment and care
PKD has no cure yet, but treatment can slow kidney damage and manage complications. Starting care early matters.
Treatment
Protect kidney function and manage complications.
Treatment aims to slow kidney damage and manage complications as they appear. It does not remove the cysts, but it can help the kidneys work for longer.
A healthcare professional should guide medicines, diet and pain relief using current kidney test results.
Slowing cyst growth
For some people with ADPKD, a medicine called tolvaptan can slow the growth of cysts and the decline in kidney function. It needs monitoring, so it is a conversation with a kidney specialist.
Controlling blood pressure
Controlling blood pressure is one of the most important parts of PKD care. ACE inhibitors or ARBs, combined with a low-salt diet, regular activity, a healthy weight and not smoking, can protect kidney function over time.
Protecting kidney function
Drinking enough fluid, and reducing salt and protein in the diet, eases the load on the kidneys. Any restriction should be set with a clinician, not guessed at.
Managing pain
Acetaminophen is generally preferred; most anti-inflammatory painkillers are avoided because they can worsen kidney function. Large or painful cysts can sometimes be drained or removed.
Treating infections
Urinary tract and kidney infections need prompt antibiotics, because an infection that reaches a cyst is much harder to clear once established.
Managing bleeding
A cyst that bleeds often settles with rest and extra fluids to dilute the urine. Bleeding that is heavy or does not stop needs medical assessment.
When the kidneys fail
Dialysis takes over the filtering the kidneys can no longer do. A transplant may be possible, sometimes before dialysis is ever needed.
Watching for aneurysms
Small aneurysms are usually monitored while blood pressure and cholesterol are controlled and smoking is stopped. Larger ones may be treated surgically.
Ongoing care
Complications that ongoing care monitors.
People experience different complications. Regular monitoring helps a healthcare professional find and treat them earlier.
High blood pressure
High blood pressure is common in PKD. Without treatment, it can damage the kidneys further and raise the risk of heart disease and stroke. Blood pressure can usually be treated.
Loss of kidney function
Kidney function declines as the cysts grow. Nearly half of people with the condition have kidney failure by the age of 60, at which point dialysis or a transplant is needed.
Ongoing pain
Pain is usually felt in the side or back. It can come from a cyst that has bled, an infection or a kidney stone. Report new or severe pain to a healthcare professional.
Cysts in the liver
Liver cysts become more likely with age and usually do not stop the liver working. Women tend to develop larger cysts than men.
Brain aneurysm
A bulge in a blood vessel in the brain is more likely in people with PKD, particularly where there is a family history of one. Screening may be offered.
Pregnancy complications
Most pregnancies are successful, but there is a raised risk of preeclampsia, especially where high blood pressure is already present. Plan pregnancy with a clinician.
Heart valve problems
As many as one in four adults with polycystic kidney disease develops mitral valve prolapse, where the valve no longer closes cleanly.
Problems in the colon
Pouches can form in the wall of the colon. They often cause nothing at all, but they can bleed or become infected.
Before you change anything
Check the painkillers.
Some anti-inflammatory painkillers can worsen kidney function. Ask a qualified professional who knows your results about pain relief, blood pressure medicines, diet changes, pregnancy plans, dialysis and transplantation.
Read our medical disclaimerWhere this comes from
This page adapts information from Mayo Clinic, “Polycystic kidney disease”. Hope4PKD has not medically reviewed it, and it carries no reviewed label. It provides general information. For advice about your own care, speak with a qualified healthcare professional and read our medical disclaimer.
The access gap
Access to treatment depends on the system around the patient.
Monitoring, medicines, dialysis and transplantation require somewhere to ask questions, someone to verify a need and a way to fund care without placing the full burden on one family. Hope4PKD is developing that pathway in Nigeria with consent, verification and transparent reporting.