VPPRN Patient-Powered Research
Central Nervous System (CNS) Vasculitis
Every 6 months, we ask our VPPRN community to check-in and tell us how they are doing. The graphs below reflect the scores/ratings of patients with central nervous system (CNS) vasculitis compared to the Network as a whole. Here is what we learned about flares, fatigue, pain, symptoms of vasculitis, and members’ current state of vasculitis at the July 2025 check-in:
- Compared to patients with other forms of vasculitis, patients with CNS vasculitis reported the following:
- similar percentage of flares reported
- higher scores for fatigue
- higher scores/ratings for their symptoms of vasculitis over the past 28 days
- similar scores for pain
- a higher percentage of patients with CNS vasculitis reported their vasculitis as currently active
- Compared to patients with other forms of vasculitis, patients with CNS vasculitis reported the following:
If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.
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FLARES and VASCULITIS
Flare Reporting: At the July 2025 check-in, 21% of patients with CNS vasculitis reported a flare in the past 6 months. This is the same percentage in the VPPRN community who reported a flare within the same timeframe.
Patients with CNS vasculitis
Entire VPPRN Community
FATIGUE and VASCULITIS
Fatigue: At the July 2025 check-in, 44% of patients with CNS vasculitis reported “quite a bit” or “very much” fatigue on average over the past 7 days. This is higher than the 33% who reported these same scores in the VPPRN community.
Patients with CNS vasculitis
Entire VPPRN Community
SYMPTOMS of VASCULITIS
Symptoms of Vasculitis: At the July 2025 check-in, patients with CNS vasculitis reported more severe symptoms over the past 28 days. 16% of patients with CNS vasculitis indicated they had no symptoms compared to 24% of patients across the broader VPPRN community. Additionally, a little over 50% of patients with CNS vasculitis rated their symptoms at 5 or higher, while just 39% of the overall Network reported symptom scores in that range.
Patients with CNS vasculitis
Entire VPPRN Community
PAIN and VASCULITIS
Pain: At the July 2025 check-in, 24% of patients with CNS vasculitis reported no pain on average over the past 7 days. This is similar to the percentage reported in the VPPRN community (27%).
Patients with CNS vasculitis
Entire VPPRN Community
MEMBERS' CURRENT STATE OF VASCULITIS
Members’ Current State of Vasculitis: At the July 2025 check-in, 36% of patients with CNS vasculitis reported their vasculitis as active. This is higher than the 22% who reported active disease in the Network.
Patients with CNS vasculitis
Entire VPPRN Community
