7 warning signs of polycystic kidney disease most people mistake for back pain

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For years, a recurring ache in the back or side gets written off as a strained muscle or a bad mattress. But it can also be an early sign of polycystic kidney disease (PKD).

PKD is a genetic disorder in which fluid-filled cysts grow in the kidneys and slowly wear down their function. The autosomal dominant form, ADPKD, affects 1 in every 400 to 1,000 people and is the most common kidney disorder passed down through families, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

Because ADPKD is autosomal dominant, a child with one affected parent has a 50 percent chance of inheriting the mutation, the National Kidney Foundation notes. Diagnosis usually arrives between ages 30 and 50, once cysts grow big enough to disturb kidney function.

Why the signs are so often missed

PKD tends to stay silent for decades. NIDDK notes that ADPKD does not cause signs or symptoms until the cysts reach roughly half an inch or larger.

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That means many people go through their 20s feeling well, then start noticing vague back pain, rising blood pressure readings or a urinary tract infection that keeps coming back.

7 warning signs worth taking seriously

1. High blood pressure. The National Kidney Foundation calls high blood pressure "the most common sign of PKD," and it often appears before any kidney problems show up on a lab test.

2. Pain in the back or side. NIDDK describes pain "in the back and sides, between the ribs and hips" as a hallmark of the condition. It can be dull and constant or come in sharper spikes.

3. Blood in the urine. Hematuria, or blood in the urine, is another recognized sign of ADPKD, according to NIDDK. It may be visible or picked up only on a urine test.

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4. Abdominal fullness or a growing belly. As cysts enlarge, the kidneys themselves can grow much bigger than normal, causing a feeling of fullness or a visibly swollen abdomen.

5. Recurrent urinary tract infections. The Cleveland Clinic lists repeated UTIs among the common warning signs of PKD in adults.

6. Kidney stones. Both the Cleveland Clinic and NIDDK include kidney stones on the list of PKD-linked problems. They can cause sudden, sharp flank pain.

7. Headaches from brain aneurysms. People with ADPKD carry a higher risk of aneurysms in the blood vessels of the brain. NIDDK warns that "large brain aneurysms are life threatening and need immediate medical treatment."

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When to talk to a doctor

Anyone with a parent or sibling diagnosed with PKD should raise it with their doctor, especially if blood pressure is creeping up, a urinary infection keeps returning, or back pain has no clear cause.

The Cleveland Clinic advises seeking urgent care for symptoms such as chest pain, shortness of breath, sudden swelling in the legs or an inability to urinate.

Blood pressure is the single biggest lever

There is no cure for PKD, the Cleveland Clinic states, but progression can be slowed. Keeping blood pressure in a healthy range is the most impactful step patients can take for their kidneys.

NIDDK recommends a target below 120/80 for many people with the condition. Standard first-line medications are ACE inhibitors or ARBs, which relax blood vessels and ease the load on the kidneys.

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For adults at risk of rapid decline, the FDA approved tolvaptan (marketed by Otsuka as Jynarque) in April 2018 to slow the growth of kidney cysts in ADPKD. About half of people with ADPKD will need dialysis or a kidney transplant by age 70, according to the Cleveland Clinic.

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This article is made and published by Jesper Bengtson, who may have used AI in the preparation.

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