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Progression

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As ADPKD progresses or gets worse, the size and number of the kidney cysts increases. Eventually the cysts begin to affect how the kidneys function, and chronic kidney disease (CKD) develops, which may result in kidney failure.

Kidney failure is the most common worry for people with ADPKD. But not everyone develops kidney failure, and the rate that ADPKD progresses varies greatly even between close relatives. While half of people with ADPKD aged over 60 have kidney failure, a third of people reach age 70 without their kidneys failing completely. Some people with ADPKD can live a normal life, without needing kidney dialysis, despite losing up to 80% of their kidney function.

It is currently impossible to predict who will develop kidney failure and when this will occur. However, your doctor can assess your rate of disease progression by regularly checking your kidney function. You can also take some actions yourself to slow disease progression and preserve your kidney function for as long as possible.

Chronic kidney disease

‘Chronic’ means a condition that is long term and does not get better, but it does not always mean that it is serious. So chronic kidney disease (CKD) describes any abnormality in kidney function, even if the kidneys may only be slightly damaged.

Guidelines for doctors from NICE say that people who have relatives with ADPKD should be offered testing for CKD. You may also be offered testing for CKD if you have:

  • Diabetes
  • High blood pressure
  • Heart disease
  • Problems with the structure of your kidneys or urinary tract (eg kidney stones, prostate problems in men)
  • Other diseases that affect the kidneys (eg systemic lupus erythematosus)
  • Blood or protein in your urine.

CKD should never be diagnosed based on a single test. Instead, your doctor should only diagnose CKD after at least three tests done over at least three months.

Doctors divide CKD into five stages, according to the percentage of your remaining healthy kidney function. Your stage will be based on your estimated glomerular filtration rate (GFR) and other problems you may have.

Stages of chronic kidney disease

Stage

% GFR

Description

1

90% or more

Normal or increased GFR, but with signs of kidney damage

2

60%-89%

Slight decrease in GFR, but with signs of kidney damage

3A

45%-59%

Moderate decrease in GFR, with or without other signs of kidney damage

3B

30%-44%

4

15-29%

Severe decrease in GFR, with or without other signs of kidney damage

5

Less than 15%

Established kidney failure

Checking your kidney function

NICE says that anyone who is at risk of CKD should have their kidney function checked at least once a year—and people with ADPKD certainly fall into this category!

Otherwise, how often your kidney function is tested depends on the stage of CDK:

Stage

GFR

Testing

1 and 2

Over 60% and other signs of kidney damage

Every year

3A and 3B

30%-59%

Every six months

4

15%-29%

Every three months

5

Less than 15%

Every six week

Your doctor may suggest that you are tested less often if your GFR stays about the same over several years. Alternatively, your GFR may be checked more often if it seems to be falling more quickly.

CKD is progressing or getting worse if your GFR falls by:

  • More than 5% within one year or
  • More than 10% within five years.

Remember that it is normal for GFR to change slightly between tests. So do not be surprised if the change is large enough to move you from one stage of CKD to another and then back again. As long as your GFR is not getting gradually worse, the most important value is your average GFR over several tests.

If your GFR suddenly falls, your doctor should test you again within two weeks to rule out other causes of kidney damage, such as certain drugs or acute or short-term injury to your kidneys.

Taking action

There is currently no cure for ADPKD, but you can slow disease progression and protect your kidneys. Follow these links for more detailed information on:

More information

The NICE (National Institute for Health and Care Excellence) produces information on the management of Chronic Kidney Disease (CKD) that summarises, in plain English, the recommendations that NICE makes to healthcare and other professions.


The information on this page is under review by the PKD Charity using the accredited Information Standard process.

How to print this information: click the printer button top right for a printer-friendly version. However, if you don't have access to a printer and would like a printed version of this factsheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 10.00am-4.30pm) or email This email address is being protected from spambots. You need JavaScript enabled to view it.

PKD Charity Helpline:The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

Please send suggestions for improvement to This email address is being protected from spambots. You need JavaScript enabled to view it.

© PKD Charity 2014 | www.pkdcharity.org.uk
Registered charity No 1160970 / SC038279

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