Lupus clinic helps Brook go from 'flailing' to flourishing

Symptoms vary, but a common complaint, especially during flareups, is a persistent flu-like state, including achy joints, fatigue and fever.

Nine out of 10 lupus patients are women, with many initially diagnosed in their 20s and 30s. Lupus also disproportionately affects Black and Latina women. Selena Gomez, Toni Braxton and Lady Gaga are just a few celebrities who live with the disease.

Brook Orlando, 49, from near Rockford, Illinois, has lived with lupus nephritis (lupus that affects the kidneys) since she was 17. She chose nursing as a career because of her condition. For most of the past three decades, she has managed her disease reasonably well with medication.

A few years ago, Brook’s disease began to flare. She didn’t realize it right away, but in retrospect Brook attributes the flareup to two highly stressful events — the loss of her dad, who was 66, followed by the sudden worldwide COVID-19 pandemic.

After noticing a foamy quality to her urine — a common sign of a lupus flareup — Brook learned about the UW Health Lupus Nephritis Clinic in Madison from a Rockford-area counselor who also suffers from the disease. Dr. Shivani Garg, a rheumatologist, and Dr. Tripti Singh, a nephrologist (kidney doctor) lead the clinic, which is the only one of its kind in Wisconsin and one of less than 10 such clinics in the U.S.

Lupus nephritis clinic improved the patient experience

The two doctors formed the clinic in 2018 for one reason: to make navigating a challenging disease less challenging for patients than has historically been the case. Before UW Health launched the clinic, located at East Madison Hospital, patient with lupus nephritis were left to fend more for themselves with not as much coordination among care team members.

“Today, our patients see a rheumatologist and a nephrologist one right after another,” says Dr. Singh. “When a patient like Brook comes in, Dr. Garg and I, along with our pharmacist and social worker, thoroughly review the patient’s history, bloodwork and medications before we walk into the exam room. We also reconvene as a team after all patients are seen that day to ensure that each patient and care team member are on the same page.”

Dr. Garg, who together with Dr. Singh spent about nine months forming the clinic, has seen notable improvements over the past several years.

“Our patients really appreciate the coordinated care approach,” says Dr. Garg. “When they hear the same plan coming from two different specialists, they feel confident rather than confused.”

Moreover, adds Dr. Singh, patients are being diagnosed and treated more quickly than before the clinic was formed.

“Patients often face financial, transportation and other barriers that can lead to delays in care,” she says. “Meredith Ingersoll, our social worker helps address these barriers so timely care is maintained.”

“Working collaboratively as a team,” adds Dr. Singh, “our doctors, pharmacists, social worker, specialty nurse and nursing assistants have all made a real difference in getting faster and better care for these patients.”

Helping patients manage high volumes of pills

A typical lupus nephritis patient may take 6 to 10 pills in the morning and another 6 to 10 pills at night. Knowing how challenging it can be for patients to keep so many prescriptions filled, our lead clinical pharmacist, Shelby Gomez, helped the Lupus Nephritis team partner with UW Health Pharmacy’s pill-packing program to ensure that patients take their medication daily.

“Each set of pills are pre-packed and mailed directly to the patient,” says Dr. Singh. “This makes it so much easier because patients are not running out of one pill one week and another the next week.”

Brook had been taking hydroxychloroquine for years to help control her lupus and protect her vital organs from further attack. After a change on her eye exam, she stopped the medication, which contributed to her flareup.

“We had Brook get her eyes examined carefully to be sure that her vision changes were not related to hydroxychloroquine,” says Dr. Garg. “Once we verified this was the case, we put her back on the drug, reduced some of her other medications and she started to improve.”

More than 3½ years after her flareup, Brook is feeling much better, working full-time and enjoying seeing her four children — three 21-year-old triplets plus a 17-year-old — grow up. All three triplets are in college; one in Illinois, one in Wisconsin and one in Minnesota.

“It’s been great,” Brook says. “Now I only come to Madison twice a year and get my bloodwork done every three months.”

Brook is incredibly relieved to have her disease under control when she thinks back to 2020.

“When my dad died and then COVID hit right after, I felt like I was flailing,” Brook says. “I wasn’t getting great care locally. Driving 90 minutes to Madison turned out to be a blessing. Dr. Garg and Dr. Singh are really kind people and good listeners. They relate to me like friends. They really wanted to help get me on track so I could do more of the things I wanted to do. Once I started seeing them, I felt like I hit the jackpot.”