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 vasculitis (CNSV) 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 2024 check-in:
- Compared to patients with other forms of vasculitis, patients with CNSV reported the following:
- similar rates of reported flares
- higher scores for fatigue
- similar scores/ratings for their symptoms of vasculitis over the past 28 days
- higher scores for pain
- a larger percentage of patients with CNSV reported their vasculitis as currently active.
- Compared to patients with other forms of vasculitis, patients with CNSV reported the following:
If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.
FLARES and VASCULITIS
Flare Reporting: At the January 2024 check-in, 29% of patients with CNSV reported a flare in the past 6 months. This is similar to the 25% in the VPPRN community who reported a flare within the same timeframe.
Patients with CNSV
Entire VPPRN Community
FATIGUE and VASCULITIS
Fatigue: At the January 2024 check-in, 49% of patients with CNSV reported “quite a bit” or “very much” fatigue on average. This is higher than the 34% reported from the VPPRN community.
Patients with CNSV
Entire VPPRN Community
SYMPTOMS of VASCULITIS
Symptoms of Vasculitis: At the January 2024 check-in, 24% of patients with CNSV reported no symptoms of vasculitis over the past 28 days. This is the same percentage reported in the VPPRN community.
Patients with CNSV
Entire VPPRN Community
PAIN and VASCULITIS
Pain: Patients with CNSV reported more pain on average at the January 2024 check-in. 14% patients with CNSV experienced no pain compared to 27% in the VPPRN community.
Patients with CNSV
Entire VPPRN Community
MEMBERS' CURRENT STATE OF VASCULITIS
Members’ Current State of Vasculitis: At the January 2024 check-in, 34% of patients with CNSV reported their vasculitis as active. This is higher than the 25% reported in the Network.
Patients with CNSV
Entire VPPRN Community
