Many people with autosomal dominant polycystic kidney disease (ADPKD) have high blood pressure. Find out here why controlling your blood pressure is important and the treatments available.
High blood pressure is also known as hypertension. It is roughly twice as common in people with ADPKD compared with the general population. At least 5-7 in every 10 adults with ADPKD develop high blood pressure before they have kidney symptoms.
The average age that people with ADPKD are diagnosed with high blood pressure is 30 years old. However, it can develop as early as childhood — between 2 and 4 out of every 10 children with ADPKD have high blood pressure.
High blood pressure may be the first sign you have ADPKD, and it may be diagnosed when your kidney function is normal. However, once you have kidney symptoms, you’re even more likely to have hypertension.
Early and effective treatment is important because high blood pressure increases your risk of having a serious cardiovascular (heart or blood vessel) problem. High blood pressure may also cause your ADPKD to progress faster, meaning your kidney function will decline more quickly.
If your blood pressure is raised, you can lower it with lifestyle changes and medication. By lowering your blood pressure to a healthy range, you’ll reduce your risk of having a cardiovascular complication. It’s not yet clear whether lowering your blood pressure can slow the progress of ADPKD.
Blood pressure (or BP) is the pressure of blood inside your arteries. The higher your blood pressure, the harder your heart needs to work to pump blood around your body.
Blood pressure is measured in millimetres of mercury (mmHg), and is written as two numbers, such as 130/80 mmHg :
So, if your systolic blood pressure is 130 mmHg and your diastolic blood pressure is 80 mmHg, your blood pressure is said to be ‘130 over 80’, written as 130/80 mmHg.
Your doctor will diagnose you with high blood pressure (hypertension) if your blood pressure is:
Diagnosing high blood pressure in children is done differently. An appropriately sized blood pressure cuff is used. Children are diagnosed with high blood pressure if their systolic or diastolic blood pressure is high compared with the usual range for their age, height and sex.
Having high blood pressure means that your heart has to work harder to pump blood around your body. It increases your risk of having serious cardiovascular problems, including a heart attack, heart failure, bleed on the brain (intracranial haemorrhage) or stroke.
If you have an enlarged blood vessel in your brain (called a brain aneurysm), having high blood pressure could slightly increase the risk of it bursting. You can learn more about aneurysms on our website.
The risk of having a cardiovascular problem differs between people, depending on factors including :
The good news is that your risk of cardiovascular disease can be reduced with treatment to lower your blood pressure. Treatment is usually quite straight forward. If you have high blood pressure, your doctor can recommend lifestyle changes and medications to lower your blood pressure and risk (see below).
If your blood pressure is extremely high, it could affect your ability to drive (it can alter your vision). If it’s above 180/100 mmHg, you should not drive until a doctor confirms it has reduced and is well controlled. Speak to the DVLA for advice.
Most people with high blood pressure have no symptoms. It’s spotted and diagnosed through blood pressure monitoring. This is why periodic blood pressure monitoring is recommended for people with ADPKD.
Most people with ADPKD have their blood pressure measured when they go to their kidney clinic for check-ups. This is usually at least once a year. Experts recommend that children with ADPKD (or at risk of ADPKD) have their blood pressure monitored every 2 years from age 5 years.
Adults who haven’t been diagnosed with ADPKD but who are at risk can choose to have their blood pressure checked. This is normally done at least once every 3 years.
Your doctor will use a blood pressure monitor (a small machine with an arm cuff) to measure your blood pressure. If these readings show it is high, you’ll be offered blood pressure monitoring over 24 hours while you go about your normal life. This is called ambulatory blood pressure monitoring. You’ll wear a monitor strapped round your waist and a cuff wrapped around your upper arm. The cuff inflates and deflates automatically throughout 24 hours to take recordings of your blood pressure. Ambulatory blood pressure monitoring is used to confirm that you have high blood pressure.
It’s normal for our blood pressure to lower while we sleep. In some people with ADPKD this doesn’t happen, even if their daytime blood pressure is normal. Ambulatory blood pressure monitoring can be especially useful for spotting night-time increased blood pressure.
If this type of monitoring is not suitable for you, your doctor might offer to lend you a blood pressure machine so you can take your own readings throughout the day. This is called home blood pressure monitoring.
If you’re found to have high blood pressure, your doctor may offer a urine test, blood test, eye test and electrocardiogram (ECG) of your heart. This is to check for other problems that high blood pressure can cause.
Your doctor will also calculate your risk of having cardiovascular problems and explain this to you.
For the general public and adults with ADPKD, the recommended or ‘target’ blood pressure is generally 140/90 mmHg or less. Some experts recommend a lower target than this (e.g. 130/80 mmHg for those with kidney function under 60%, or <110/75 mmHg for those with kidney function over 60%). Your doctor will recommend the best target for you.
Blood pressure targets in children are based on what is normal for their age, sex and height.
Your doctor will suggest lifestyle changes and medications to bring your blood pressure below this target.
Taking the steps below can help to lower your blood pressure and reduce your risk of having a cardiovascular problem :
You’ll find more detailed information and tips on a healthy diet and lifestyle on our website.
If you have high blood pressure and ADPKD, your doctor should discuss options for medication with you. Medications to reduce blood pressure are known as antihypertensive drugs. For people with ADPKD, one medication will probably be enough to control blood pressure. However, some people are advised to take more than one.
Your doctor will probably recommend an angiotensin-converting enzyme (ACE) inhibitor or angiotensin-II receptor blocker (ARB), unless there is a reason you cannot take these.
A common side effect of these medicines is that your blood pressure may become too low. This is called hypotension and can make you feel dizzy or tired. Some people get a persistent dry cough with ACE inhibitors. Other side effects are less common — ask your doctor for more information to help you decide which medication might be best for you.
Other medicines sometimes used to reduce blood pressure are calcium channel blockers and diuretics. If your ACE inhibitor or ARB is not controlling your blood pressure sufficiently, your doctor may suggest adding one of these medications.
If you have any side effects, talk to your doctor. There are many medications to lower blood pressure, so work together with your doctor to find the right one for you.
These medicines work by reducing the amount or action of a hormone in your body called angiotensin II. This hormone can increase blood pressure. By reducing angiotensin II signalling, ACE inhibitors and ARBs reduce your blood pressure.
To keep your blood pressure at a healthy level, you’ll need to continue your healthy lifestyle and your prescribed medication. You’ll have annual blood pressure checks. If your blood pressure is not well controlled, your doctor can recommend different or additional medications for you.
Some people like to check their blood pressure themselves. While you should not rely on this instead of having checks with your doctor, it can be helpful to put your mind at ease. Your kidney specialist or GP might suggest home monitoring, and some chemists offer free blood pressure checks. To find your nearest chemist offering this service, go to bloodpressureuk.org. Alternatively, you could consider buying your own approved blood pressure monitor.
ADPKD can increase blood pressure in two main ways: 1) by altering the lining of your blood vessels, and 2) by activating hormones that control blood pressure.
The faulty genes that cause ADPKD (PKD1 and PKD2) are not only important for your kidneys: they’re also found in the lining of your blood vessels. When these genes don’t work correctly, it can interfere with the way that the vessels tighten and relax. In people with ADPKD, blood vessels tend to be tighter and narrower than usual. Narrower vessels mean the blood has less room to flow, increasing blood pressure. You could think of it like a motorway where a lane has been closed — the traffic becomes busier as it fights for space.
ADPKD can also activate hormones that control blood pressure (e.g. angiotensin II). There are a number of reasons why these hormones can be activated. For example, kidney cysts can squash tiny vessels in the kidney, which makes it harder for blood to flow through them. This can lead to hormones levels rising as the body tries to get more blood to the area.
High blood pressure tends to worsen as kidney cysts grow and the kidneys enlarge.
People whose ADPKD has progressed quite a lot are at increased risk of having additional cardiovascular problems, especially if their blood pressure isn’t controlled. These include:
These conditions increase your chance of having a potentially fatal problem such as abnormal heart rhythm, a heart attack or stroke , so it’s important they’re monitored and treated.
If you have a high risk of having a cardiovascular problem, your doctor might recommend additional medications. These include:
Additional treatments to lower cardiovascular risk are being tested in clinical trials.
Your doctor will be able to explain whether additional medications might be helpful for you and why.
Find your nearest chemist offering free blood pressure checks at bloodpressureuk.org.
Written by Hannah Bridges, PhD, Independent Medical Writer, HB Health Comms Limited. Reviewed by Dr Roslyn Simms, Consultant Nephrologist, Sheffield Kidney Institute.
With thanks to all those affected by ADPKD who contributed to this publication.
Contact us for the version of this factsheet with scientific references.
IS Ref No: ADPKD.BP.V1.8
© PKD Charity 2019
Due to be medically reviewed 2022
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.
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