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 January 2025 check-in:
- Compared to patients with other forms of vasculitis, patients with CNS vasculitis reported the following:
- more flares
- higher scores for fatigue
- higher scores/ratings for their symptoms of vasculitis over the past 28 days (this is a change from the scores we saw at the July 2024 check-in where the rates were similar)
- higher scores for pain
- a larger percentage of patients with CNS vasculitis reported their vasculitis as currently active (this is a change from the scores at the July 2024 check-in where the rates were more closely aligned)
- 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 January 2025 check-in, 33% of patients with CNS vasculitis reported a flare in the past 6 months. This is higher than the 24% 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 January 2025 check-in, 60% 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 34% who reported these same scores in the VPPRN community.
Patients with CNS vasculitis
Entire VPPRN Community
SYMPTOMS of VASCULITIS
Symptoms of Vasculitis: At the January 2025 check-in, patients with CNS vasculitis reported more severe symptoms over the past 28 days. Only 7% indicated they had no symptoms, compared to 23% of patients across the broader VPPRN community. Additionally, nearly three-quarters of patients with CNS vasculitis rated their symptoms at 5 or higher, while just 40% of the overall Network reported symptom scores in that range.
Patients with CNS vasculitis
Entire VPPRN Community
PAIN and VASCULITIS
Pain: Patients with CNS vasculitis reported more pain on average at the January 2025 check-in. 7% patients with CNS vasculitis experienced no pain compared to 26% in the VPPRN community.
Patients with CNS vasculitis
Entire VPPRN Community
MEMBERS' CURRENT STATE OF VASCULITIS
Members’ Current State of Vasculitis: At the January 2025 check-in, 33% of patients with CNS vasculitis reported their vasculitis as active. This is higher than the 23% who reported active disease in the Network.
Patients with CNS vasculitis
Entire VPPRN Community
