Autosomal dominant polycystic kidney disease (ADPKD) is a chronic condition that causes cysts to grow in the kidneys.
It affects an estimated 1 in 400 to 1,000 people, reports the National Institute of Diabetes and Digestive and Kidney Diseases.
Read on to learn about its symptoms, causes, and treatments.
ADPKD can cause a variety of symptoms, including:
- pain in your back
- pain in your sides
- blood in your urine
- increased abdomen size
- a sense of fullness in your abdomen
The condition also puts you at risk of complications, such as:
- high blood pressure
- urinary tract infections
- cysts on your liver or pancreas
- abnormal heart valves
- brain aneurysm
- kidney failure
Symptoms often develop in adulthood, between the ages of 30 and 40, although they may also appear at more advanced ages. In some cases, symptoms appear in childhood or adolescence.
The symptoms of this condition tend to get worse over time.
ADPKD is an inheritable genetic condition.
In most cases, it results from a mutation on the PKD1 gene.
To develop ADPKD, someone needs to have one copy of the affected gene. They typically inherit the affected gene from one of their parents, but in rare cases, the genetic mutation may occur spontaneously.
If you have ADPKD and your partner doesn’t have it, any children you may have together have a 50 percent chance of developing the disease.
To diagnose ADPKD, your doctor will ask you about your symptoms, personal medical history, and family medical history.
They may order an ultrasound exam or imaging tests to check for cysts and other potential causes of your symptoms.
They may also order genetic testing to learn if you have a genetic mutation that causes ADPKD. If you have the affected gene, they may encourage any children that you have to get genetic testing as well.
There’s no known cure for ADPKD. However, treatments are available to help manage the disease and its potential complications.
To help slow the development of ADPKD, your doctor may prescribe tolvaptan (Jynarque). It’s the only medication that the Food and Drug Administration (FDA) has approved specifically to treat ADPKD. The medication may help delay or prevent kidney failure.
Depending on your specific condition and treatment needs, your doctor may also add one or more of the following to your treatment plan:
- lifestyle changes to lower blood pressure and promote kidney health
- medication to reduce blood pressure, relieve pain, or treat infections that may occur in the kidneys, urinary tract, or other areas
- surgery to remove cysts that are causing serious pain
Managing ADPKD and sticking with your treatment plan can be challenging, but it’s vital for slowing the progression of the disease.
If your doctor prescribes tolvaptan (Jynarque), you will need to have regular tests to assess the health of your liver because the medication can cause liver damage. Your doctor will also closely monitor the health of your kidneys to see if the condition is stable or progressing.
If you develop kidney failure, you will need to receive dialysis or a kidney transplant to compensate for the loss of kidney function.
Talk to your doctor to learn more about your treatment options, including the potential benefits, risks, and cost of different treatment approaches.
Most of the medications that your doctor may consider to help you treat or manage ADPKD carry some risk of side effects.
For example, Jynarque may cause excessive thirst, frequent urination, and in some cases, serious liver damage. Some people who’ve taken this medication have developed liver failure that’s required liver transplantation to treat.
Other treatments that target specific symptoms of ADPKD may also cause side effects. To learn more about the potential side effects of different treatments, talk to your doctor.
If you think you may have developed side effects from treatment, let your doctor know right away. They may recommend changes to your treatment plan.
Your doctor is also likely to order routine tests while you’re undergoing certain treatments to check for signs of liver damage or other side effects.
Your life expectancy and outlook with ADPKD depend on several factors, including:
- the specific genetic mutation that’s causing ADPKD
- any complications that you develop
- treatments that you receive and how closely you stick to your treatment plan
- your overall health and lifestyle
Talk to your doctor to learn more about your condition and outlook. When ADPKD is diagnosed early and managed effectively, people are more likely to be able to maintain full, active lives. For example, many people with ADPKD who are still working when they’re diagnosed are able to continue their careers.
Practicing healthy habits and following your doctor’s recommended treatment plan may help prevent complications and keep your kidneys healthier for longer.
ADPKD can cause a variety of symptoms and potential complications, including kidney failure.
Following your doctor’s recommended treatment plan may help limit the damage to your kidneys and other parts of your body.
Talk to your doctor to learn more about your treatment options.