More than 8 million Americans live with gout (that’s the entire population of New York City), and a new survey of 1,000 gout patients and 500 caregivers of gout patients suggests that for many, it’s a disease that’s out of control. Gout is caused by high serum uric acid (or sUA) levels in the blood, which can lead to painful flares, particularly in extremities, such as big toes and fingers. It can also occur in ankles, feet, hands, wrists and knees. And it hurts like a $*@!.
Patients surveyed experienced an average of eight painful gout attacks per year, and more than half of these patients reported attacks that lasted three or more days. In addition, 76 percent of patients indicated that gout hinders their ability to walk, climb stairs or sleep. Unsurprisingly, caregivers and families are also impacted by flares, as nearly 60 percent of patients surveyed admitted they wouldn’t be able to meet their basic needs (e.g., running errands, bathing, etc.) during a gout attack if they did not have someone to help them.
It gets worse. Talk about a disconnect: Despite frequent flares and disabling days, most of these patients and caregivers stated they were satisfied with existing gout treatments. More than two-thirds of patients and 9 in 10 caregivers surveyed said they accept painful gout attacks as part of living with the disease. And the pain is no joke: Among the 204 surveyed women with gout who have children, when asked how strongly they agreed with the statement that gout attacks are more painful than childbirth, almost half (44 percent) agreed or strongly agreed.
It’s possible for patients to gain better control over their gout. In other words, in the year 2017, nobody should be suffering from gout.
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Don’t Blame Yourself
Many surveyed people with gout, particularly those 45 years and older, blamed themselves for the disease. More than half reported that “I sometimes feel responsible for causing my gout due to my diet and/or alcohol consumption.”
Often, gout is blamed on a person’s overindulgence in a diet rich in purines, which are found in foods like meat (including organ meats), beer and certain fish (including anchovies, herring and mackerel). But gout isn’t just caused by diet. More often than not, hereditary factors contribute significantly to gout.
There are two causes of gout: overproduction and underexcretion of uric acid. As explained by the Mayo Clinic, normally, uric acid dissolves in the blood, eventually passing via urine. However, if the uric acid builds up or isn’t excreted, then it crystalizes and can cause pain, inflammation and swelling. When the crystals are spotted, a gout diagnosis is made. Compared to other chronic diseases, gout is pretty well-understood, plus reasonably and effectively treatable.
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Don’t Hide Flares
Concerningly, nearly 3 in 10 patients surveyed admitted to hiding gout attacks from loved ones, with more than two-thirds of caregivers stating they wish their loved ones would tell them sooner when they’re experiencing a gout attack. Further, half of patients surveyed don’t report all their gout attacks to their doctor.
Treating gout effectively relies on patients, caregivers and physicians having open communication with each other. In between appointments, a patient (or their loved one) should monitor the onset of symptoms, flares and how treatment is making the person with gout feel. A great place to track this type of patient-reported information is ArthritisPower, a free mobile app created by CreakyJoints for people with all forms of arthritis, including gout. Information about how you’re faring, which is entered into ArthritisPower, can be sent directly to a physician in advance of an appointment. Plus, it becomes part of a huge pooled data research registry.
[See: 14 Ways Caregivers Can Care for Themselves.]
Get Gout Guidance
Gout can be treated, but sometimes the standard treatments or poor adherence to treatment can lead to uncontrolled gout. Medically speaking, patients who have more than two gout attacks per year and persistently high uric acid levels above 6 mg/dL are considered to have uncontrolled gout by the American College of Rheumatology, a fact only known by a mere 11 percent of patients and 9 percent of caregivers surveyed.
Long-term effects of uncontrolled gout can lead to serious complications. That’s why it’s vital that people with gout report all flares and symptoms to their doctor and proactively ask their doctor for a blood test to monitor if they’re reaching and sustaining a goal to keep their serum uric acid levels under 6 mg/dL. People with gout should also talk about their illness with the family, friends and employers so their community can provide support when needed. Online support is also available at CreakyJoints.
The survey was conducted online among 1,000 gout patients and 500 caregivers of gout patients in March 2017 to gain insight into their perceptions of and experiences with gout. Edelman Intelligence conducted the survey, which was made possible by CreakyJoints, with funding from Ironwood Pharmaceuticals.
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Gout Is Out of Control, but it Doesn’t Need to Be originally appeared on usnews.com
