Patients With Lupus Report More Flares, Different Symptoms

Allison Shelley

October 21, 2018

Tunde Otulana, MD, chief medical officer for Mallinckrodt Pharmaceuticals, who worked on a survey of more than 1500 patients with the Lupus Foundation of America, shared findings with Medscape Medical News. (Camera work by John Gress; video edit by John Rodriguez)

 

CHICAGO — Patients with lupus might be experiencing more flares and different symptoms than healthcare providers realize, according to results of a survey presented here at the American College of Rheumatology (ACR) 2018 Annual Meeting.

In the online survey, administered through the Lupus Foundation of America and Research Now, nearly 80% of the patients who responded reported a lupus flare in the previous year.

Many said they had four or more flares, and the majority perceived their flares to be moderate to severe, said lead investigator Winnie Nelson, from Mallinckrodt Pharmaceuticals. "Patients who had more flares had worse Lupus Impact Tracker scores and more hospital admissions."

Almost half the patients sought medical care from a doctor or emergency services, or were admitted to the hospital. But many patients treated their flares themselves, with over-the-counter medications and prescription drugs.

The findings confirm that lupus flares are prevalent and typically require healthcare and medication. However, not all of the symptoms that patients struggle with are in line with clinical definitions of flares, which can lead to communication challenges in practice.

 

Many patients could not predict when a flare would occur, but investigators report that emotional stress, overdoing it, lack of rest, and sunlight exposure appeared to trigger symptoms.

These findings provide insight into the way clinicians and patients can work together, the investigators explain, "to identify and manage flares more effectively."

Patients Connecting to Patients

In another patient-perspective poster presented at the meeting, Marisa Zeppieri-Caruana, from New York City, reports on her search for lupus treatments beyond her regular therapies.

Zeppieri-Caruana, who is the leader of an online patient community and is known as the Lupus Chick, said she is working with an allergist and nutritionist to avoid certain foods and add more anti-inflammatory options to her diet.

"Eating cleaner, preparing my own meals, and juicing increase my energy and even improved some of my vitamin and mineral levels in my bloodwork over the past few years," she reported.

She said she sometimes she finds it easier to connect with other patients than with medical professionals.

"Being surrounded by and having contact with half a million people per month who are living with lupus and other chronic illnesses — who 'get it' — helps me get through the difficult moments," she explained.

My medical team doesn't always understand flare-ups and daily struggles, she added.

At the opening session for the conference, ACR President David Daikh, MD, gave a warm welcome to patients attending the meeting. "Thank you for helping us understand," he said.

The patient survey was funded by Mallinckrodt Pharmaceuticals, with resources from the Lupus Foundation of America and Research Now. Zeppieri-Caruana reports receiving research funding and travel support from AstraZeneca.

American College of Rheumatology (ACR) 2018 Annual Meeting: Abstract 2912 to be presented October 24, 2018; abstract PP09 to be presented October 21, 2018.

Follow Medscape Rheumatology on Twitter @MedscapeRheum and Allison Shelley @allishelley

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