Doctors thought a dad of 3 had cancer. An offhand suggestion led to an unexpected diagnosis.

Andy Provencher’s life took a drastic turn in June 2020 when a mountain biking accident led to a shocking discovery. Initially fearing a diagnosis of terminal lung cancer, Provencher embarked on a year-long journey to unravel the mystery of his symptoms. Multiple doctors were unable to provide a clear diagnosis, leaving Provencher in a state of uncertainty and physical decline.

After consulting with Dr. John Stone, a rheumatologist specializing in IgG4-RD, Provencher finally received a definitive diagnosis of a rare immune condition called IgG4-RD. This condition, affecting various organ systems, often goes undetected and misdiagnosed due to its slow progression and nonspecific symptoms. Provencher’s misdiagnosis of lung cancer had taken a toll on his mental well-being, highlighting the importance of accurate diagnosis and treatment.

Enrolled in a groundbreaking clinical trial, Provencher underwent treatment with inebilizumab, a medication targeting CD19 antigen on B cells, leading to significant improvements in his condition. The trial’s success paved the way for FDA approval of inebilizumab as the first treatment for IgG4-RD in April 2025.

Three years post-diagnosis, Provencher continues to take inebilizumab and enjoys a better quality of life. While IgG4-RD has no permanent cure, Provencher remains hopeful that ongoing treatment will prevent relapse and further disease progression. His journey has inspired advocacy and education efforts through the IgG4ward! Foundation, founded by Dr. Stone, with Provencher’s wife, Katharine, as the director of advocacy and community engagement.

Reflecting on his experience, Provencher emphasizes the importance of perseverance and seeking answers in the face of uncertainty. His story serves as a testament to the power of medical advancement and the resilience of the human spirit in overcoming challenges. Keep moving forward, keep asking questions, and never lose hope in the journey towards better health and understanding of rare diseases.