Granulomatosis with polyangiitis (Wegener's)

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is granulomatosis with polyangiitis (Wegener's)?

Granulomatosis with Polyangiitis (Wegener's) is a rare automimmune disorder that causes inflammation of small and medium sized blood vessels (vasculitis) primarily in the lungs and kidneys.

Common symptoms reported by people with granulomatosis with polyangiitis (Wegener's)

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people with granulomatosis with polyangiitis (Wegener's)

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Rituxan)
Type
Prescription Drug
How many have tried
3
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Procedures
How many have tried
1
Treatment name(s)

(Solu-Medrol Infusion)
Type
Prescription Drug
How many have tried
1
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
1

Data from patients with granulomatosis with polyangiitis (Wegener's), who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with granulomatosis with polyangiitis (Wegener's)

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Rituxan)
Perceived effectiveness
for granulomatosis with polyangiitis (Wegener's) (1 evaluation)
Side effects
fatigue post infusion
Total evaluations
1
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
sleepiness
Total evaluations
1
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Treatment name(s)

(Solu-Medrol Infusion)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Treatment name(s)

(Deltasone)
Perceived effectiveness
for granulomatosis with polyangiitis (Wegener's) (1 evaluation)
Side effects
insomnia
Total evaluations
1
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with granulomatosis with polyangiitis (Wegener's), who reported starting treatments within the last 5 years.
Last updated:

Who has granulomatosis with polyangiitis (Wegener's) on PatientsLikeMe?


Age
Age Proportion # of patients
<20 1
20s 13
30s 17
40s 20
50s 42
60s 21
70+ 12
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 11
20-29 years 9
30-39 years 8
40-49 years 11
50-59 years 9
60-69 years 2
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 35
Female 91

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 62
Not Diagnosed 2

These charts show data from granulomatosis with polyangiitis (Wegener's) patients who have completed their condition history
Last updated: