After months of symptoms and a long journey to diagnosis, Michelle Williams was eventually diagnosed with IC-MPGN and saw significant improvement as she participated in a clinical trial of a new drug that would change the treatment of the disease.
Michelle Williams started to feel high blood pressure, but didn’t think much of it. As the months went by, other symptoms appeared, such as fatigue, swelling in the feet, ankles and legs, and a frequent need to urinate during the night.
Convinced it could all be related to stress, she followed her doctor’s recommendations to change her lifestyle, but her condition continued to worsen.
Given the persistence of symptoms, she was referred to a nephrologist. The first consultation, in June 2023, did not bring any answers, so he decided to seek a second opinion at Cleveland Clinicwhere he sent all his medical documentation. A few weeks later, she was called in for a two-day assessment.
According to , after a series of tests, the nephrologist Jagmeet Dhingra He was alarmed by the test results and requested a bone marrow biopsy and a kidney biopsy. Williams underwent tests within the next 24 hours and underwent a thorough clinical investigation.
The first results pointed to multiple myelomaa type of blood cancer that can affect the kidneys. For almost six months, she underwent chemotherapy and immunotherapy. However, the symptoms persisted.
A new round of biopsies revealed that the bone marrow was healthy, but immune complex deposits were accumulating in the kidneys. After ruling out other hypotheses, Dhingra diagnosed her with IC-MPGNa rare kidney disease related to the immune system.
In many cases, the cause of IC-MPGN is not identified. Patients often present with symptoms such as fatigue and swelling, and the diagnosis is only made when the disease has already caused significant damage.
At the time of Williams’ diagnosis, there was no treatment specific to this disease. The available treatment was based on corticosteroids, immunosuppressants and, in some cases, chemotherapy, therapies that could alleviate symptoms, but rarely stopped the progression of the disease. Many patients ended up progressing to terminal renal failure, even after a kidney transplant.
She was prescribed several medications, but these either produced no improvement or left her feeling worse.
In November 2024, he received an unexpected call. Dhingra had become aware of the pegcetacoplana drug still in clinical trials that showed potential as a treatment for IC-MPGN. Williams agreed to participate in the study and was enrolled in February 2025.
The effects were almost immediate.
“Immediately, we saw a change. I was my energetic self again. I felt like I had my freedom back,” Williams said.
Six months later, the drug became the first approved by the FDA for the treatment of IC-MPGN. The injectable drug is sold under the brand Empaveli and represents a “turn to the sick“, stated Dhingra.
After more than a year of treatment, Williams is showing significant improvement, according to the nephrologist. She continues to be monitored every two months, although the expectation is that these appointments will become less frequent if her clinical condition remains stable.
