Pain, kidney stones and more

Autosomal dominant polycystic kidney disease (ADPKD) is a chronic inherited disease characterized by the growth of cysts on the kidneys. This form of polycystic kidney disease affects approximately 1 in 400 to 1,000 people.

It can affect several people in a family, and it does not skip generations. If you have the disease, there is a 50% chance that children will have it too.

ADPKD usually has no symptoms in its early stages. However, the disease becomes more apparent when the growing cysts begin to affect kidney function.

Here are six of the most common symptoms of ADPKD.

Pain is common with ADPKD. This happens when the cysts get bigger and increase in number. The kidneys can also grow, putting pressure on other organs and tissues.

You might experience kidney pain in your side, abdomen, or back. It can be moderate or intense depending on the severity of your condition.

Over-the-counter pain relievers can help relieve pain, but it’s best to speak with your doctor before managing kidney pain with medication.

Certain medications are not recommended, such as nonsteroidal anti-inflammatory drugs (NSAIDs), because they can cause kidney problems. These medications include ibuprofen (Motrin) and naproxen sodium (Aleve).

Acetaminophen (Tylenol) is the safest option for managing kidney pain.

UTIs occur when bacteria in the urinary tract cause an infection. If left untreated, an infection can spread to the bladder and kidneys.

UTIs develop when cysts block and disrupt the typical flow of urine, causing urine to stay in the bladder longer. The bacteria can then multiply and cause a urinary tract infection.

Symptoms of a UTI can include:

  • painful urination
  • frequent urination
  • back or flank pain

Your doctor may prescribe an antibiotic to treat the infection.

ADPKD can put you at risk for kidney stones. These occur in about 20 to 30 percent of people with polycystic kidney disease.

Kidney stones are hard deposits that develop in the kidneys. Symptoms may include severe abdominal pain and vomiting. It happens when the cysts block the tubes that help your kidneys filter waste.

Crystals can form when urine and waste sit in the kidneys too long, leading to kidney stones. Kidney stones often pass on their own, but your doctor may prescribe medication to ease the discomfort until a stone passes.

Blood in your urine is another symptom of ADPKD. The blood may appear pink, red, or brown, but it is not always visible to the naked eye. Sometimes it is only detectable under a microscope.

Blood in the urine may come from a ruptured cyst or from a ruptured blood vessel around the cyst.

Traces of blood can also indicate a urinary tract infection or kidney stones. Tell your doctor if you see blood in your urine.

High blood pressure is another symptom of ADPKD. Sometimes this is the first sign of this condition.

The exact link between kidney cysts and high blood pressure is not fully understood. This is likely due to cysts that constrict blood vessels and prevent blood from flowing properly.

Treatment includes medication to lower blood pressure as well as lifestyle changes. These changes may include:

  • maintain a moderate weight
  • increase physical activity
  • follow a low-sodium diet

Some people with ADPKD have reported experience fatigue, weakness, or a general feeling of discomfort during the early stages of the disease or before they are diagnosed.

We think that more than half of people with ADPKD have kidney failure at age 70. This is when the kidneys no longer work properly.

There is currently no cure for this disease, but a drug called tolvaptan (Jynarque) may help delay kidney failure in people with a rapidly progressing form of the disease.

Once kidney failure has occurred, treatment involves dialysis and sometimes kidney transplantation.

You can take other steps to protect your kidneys and delay the loss of kidney function. These steps include:

  • manage your blood pressure
  • have a balanced and nutritious diet
  • reduce your alcohol consumption
  • avoid smoking
  • avoiding medications that affect kidney health, such as NSAIDs

Another complication is the risk of preeclampsia if you are pregnant and have high blood pressure due to ADPKD. Additionally, cysts can develop on other organs such as the liver and pancreas. ADPKD can also cause brain aneurysms and heart valve problems in some people.

Although it is an inherited condition, ADPKD is usually not diagnosed until adulthood. Talk to a healthcare professional if you have symptoms such as:

  • high blood pressure
  • blood in urine
  • flank or back pain
  • repeated urinary or kidney infections

Your doctor may perform kidney function and imaging tests such as an ultrasound, CT scan, or MRI to look for cysts on your kidneys. Based on the results, they can recommend treatment to reduce discomfort and complications.

ADPKD is a chronic disease. Recognizing its symptoms and getting an early diagnosis can help you avoid complications.

Although kidney failure can occur in more than half of people with ADPKD, protecting your kidneys with medications and lifestyle changes can help slow the progression of the disease.

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