Woman with rare kidney disease improves on newly approved drug after earlier misdiagnosis of multiple myeloma

Michelle Williams experienced steady improvement in swelling and daily function after more than a year on the first FDA-approved treatment for her rare kidney disease. Williams began noticing high blood pressure and swelling in her feet, ankles and legs while raising two young children and renovating a farmhouse during the COVID-19 pandemic.

Fatigue and frequent nighttime urination also developed.

In June 2023 a physician assistant reviewed none of the records she brought and told her only to lower her blood pressure, scheduling a return visit in six months. In July 2023 Williams sent her records and a letter stating "Please help me, something's wrong" to the Cleveland Clinic. Two full days of testing followed.

A nephrologist called the same day she drove home and ordered immediate kidney and bone marrow biopsies. Those tests first indicated multiple myeloma. After six months of chemotherapy and immunotherapy, further biopsies showed healthy bone marrow but immune deposits in the kidneys.

Dr. Jagmeet Dhingra diagnosed immune-complex membranoproliferative glomerulonephritis, or IC-MPGN. Dr. Carla Nester, who was not involved in the case, said the condition affects one to four people per million and previously carried a roughly 10-year progression to end-stage kidney disease under steroid and immunosuppressant regimens.

Dhingra told Williams in November 2024 about a clinical trial of pegcetacoplan. She enrolled in February 2025. Six months later the drug, sold as Empaveli, received FDA approval for adults and children over age 12.

Dhingra said swelling has resolved and medication needs have dropped sharply.