This is a page I created for myself after being diagnosed with Granulomatosis with Polyangiitis in 2019. GPA is a rare autoimmune disease, and when you get diagnosed with something you've never heard of, you end up with a dozen browser tabs, scattered research papers, and a growing collection of acronyms you can't quite remember. This page is my attempt to keep everything in one place—trustworthy information, research updates, and resources I actually use.
I'm sharing it because I know how isolating and confusing it can be when you're newly diagnosed or trying to make sense of what living with GPA actually means. Maybe it'll be useful to someone else figuring this out too.
I am not a doctor, researcher, or medical professional. I use tools like my GPA Updates & News research space to help me find and summarize information, but every decision about your health belongs with you and your healthcare team. This page is for informational and educational purposes only.
(In the future, I plan to share more about my diagnosis story through a video, likely after my appointment in August 2026.)
Granulomatosis with Polyangiitis (GPA) is a rare autoimmune disease that causes inflammation in small and medium‑sized blood vessels. It most often affects the sinuses, lungs, and kidneys, and can show up with symptoms like chronic sinus problems, coughing, shortness of breath, fatigue, joint pain, or blood in the urine. It’s serious, but with early diagnosis and treatment many people do well and are able to keep living their lives.
For more detailed medical explanations, I recommend these pages:
The Vasculitis Foundation is the primary advocacy and support organization for people with GPA and other forms of vasculitis. They offer multiple virtual support group meetings that are free to attend with registration. The foundation hosts weekly general support meetings, evening support groups (second Tuesday of each month at 7:00 PM CT), and specialized groups including one for EGPA patients and a teen chat for young people ages 13 to 19.
For individual peer connection and discussion, Mayo Clinic Connect hosts an active GPA discussion group where people share experiences and practical advice. While online communities can be valuable sources of support, approach Facebook groups and unmoderated forums with caution, as they sometimes amplify anxiety or spread misinformation. Stick with groups affiliated with established medical institutions or the Vasculitis Foundation when possible.
Key Support Resources:
GPA is not just lab results and imaging reports; it’s the daily reality of fatigue, uncertainty, and figuring out what “normal” looks like now. This is the human side of living with a rare, chronic illness.
I’m collecting gentle, practical resources about coping, pacing, and staying present while handling medical appointments, tests, and treatment side effects.
The Vasculitis Foundation shares stories that offer honest perspectives on diagnosis, treatment, and daily life with GPA. Tonya Campbell's journey, shared in 2026, describes a path from mysterious symptoms through diagnosis to managing chronic complications, including fatigue, kidney disease, and the challenge of balancing medical care with everyday life.
The GPA-info.org site also features narratives about managing sinus issues, fatigue, and joint pain while trying to keep an active life through consistent treatment.
Living with GPA means navigating exhaustion even with adequate sleep, managing chronic sinus problems, and accepting that remission doesn't mean the disease disappears. People often describe the importance of tracking symptoms, keeping medication journals, and building a support system that includes both medical providers and people who understand the reality of chronic illness.
Resources:
I use my GPA Updates & News research space to track new studies, guidelines, and trustworthy articles. This is where I keep a running list of the research I want to revisit and summarize.
Summary coming soon. I’ll add a short, person‑friendly explanation of what the study looked at, what it found, and what it might mean for people living with GPA.
Why it matters: This section will explain, in one or two sentences, why someone with GPA might care about this research.
Source: I’ll link to PubMed, journal articles, and lay explanations once I’ve written the summary.
The current standard of care for GPA is guided by joint recommendations from the American College of Rheumatology (ACR) and the Vasculitis Foundation, published in 2021, and by the European Alliance of Associations for Rheumatology (EULAR) guidelines updated in 2024. Both sets of guidelines recommend rituximab (Rituxan) as the preferred treatment for relapsing GPA and recommend reduced glucocorticoid regimens to minimize long-term harm from prolonged steroid exposure.
For people interested in following current research, ClinicalTrials.gov maintains a searchable database of ongoing clinical trials for GPA. Recent studies include investigations of CAR T cell therapy for relapsing or refractory ANCA-associated vasculitis and biomarker research to improve disease monitoring.
Key Resources:
Rituximab (Rituxan) has become the standard treatment for GPA, particularly for relapsing disease, and is more effective than azathioprine in maintaining remission. Studies show that major relapse occurred in only 3% of rituximab patients versus 29% of azathioprine patients at 28 months. However, rituximab does carry risks including increased infection rates and infusion-related reactions, particularly during the first infusion.
Maintenance therapy typically continues for 24 to 48 months following remission, with longer treatment for people at higher relapse risk. The goal of modern treatment is to achieve remission while minimizing long-term damage from both the disease and the treatments themselves, particularly glucocorticoids.
Resources: