PKD Life - Spring 2020 - 19

Types
of Pain

CHRONIC

eth Overton, 46, a nurse in Pleasantville,
Iowa, was dumbfounded when she
developed right-sided flank pain a few
years ago and something that felt like a
golf ball at the site. The mystery was solved when
she got a diagnosis of PKD.
But Overton's pain, which often prevented her
from spending time with her family, was not so easily
resolved. "The first physician I saw told me I had to live
with it," she says. "There was nothing they could do."
Overton tried pain patches and topical gels
along with medications, but nothing helped much.
It wasn't until she saw a PKD specialist that she
learned of new options.
After Overton underwent an investigational
procedure called foam sclerotherapy, which drains
painful cysts and destroys the lining to prevent
them from recurring, she noticed a dramatic
improvement. And she got even more relief when
she started taking a new drug called tolvaptan,
which slows the progression of the disease.
Like Overton, many people with PKD experience
pain, from the occasional urinary tract infection
to persistent discomfort. An estimated 60% of
patients experience acute or chronic pain, the latter
being pain that lasts for more than a few days.
Unfortunately, patients don't always get help
when they visit the doctor. "Many people with this
disease have had doctors who trivialized their pain,"
says Marie C. Hogan, M.D., Ph.D., professor of medicine and consultant in the Division of Nephrology
and Hypertension at the Mayo Clinic in Rochester,
Minnesota. "Most providers don't know what to do
with this disease. Some say come back later when
you're close to dialysis."

FEELS
Sharp and knifelike,
dull and aching,
cramping, or
fullness

But there is a growing array of
treatments for the pain of PKD. If you're
in pain, talk to your doctor about the
options or ask to be referred to a PKD
specialist who can help you manage it.

TYPES OF PAIN

TREATMENT
Options include
medications,
noninvasive and
complementary
techniques,
and surgery

ACUTE

FEELS
Severe, sharp,
or stabbing
TREATMENT
Pain medications
and antibiotics
when needed are
usually sufficient
for these problems

PKD, which causes progressive cyst
enlargement in the kidneys and the liver,
can lead to both acute and chronic pain.
"The pain of PKD is complex," Dr. Hogan
says. "There are quite a variety of different causes."
Acute pain, described as severe,
sharp, or stabbing in the side of the
abdomen, can occur when a cyst bleeds,
becomes infected, or ruptures. Kidney
stones-common in people with PKD-
cause severe sharp pain in the back,
side of the abdomen, or groin. Urinary
tract infections (UTIs) can cause the
sudden onset of pain, accompanied by
fever and painful urination.
Pain medications and antibiotics when
needed are usually sufficient for these
problems. "Acute pain is generally easier
to manage than chronic pain," says Michel
Chonchol, M.D., professor of medicine
and chief of the Division of Renal Diseases
and Hypertension at the University of
Colorado School of Medicine in Aurora.
"For UTIs, for instance, patients can come
in in a lot of pain, but a good course of
antibiotics can have a significant effect on
improving their pain symptoms."

L E A R N M O R E A B O U T M A N A G I N G P K D PA I N AT P K D C U R E .O R G

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3/30/20 11:24 AM

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PKD Life - Spring 2020

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