Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Table 3 Summary of patient-reported description of attack symptoms during the interviews

Type of symptoms	Patients mentioning symptoms (n = 10) (%)	Patient-reported symptom descriptions
Pain	100	Abdominal pain Stomach pain Headaches
Psychiatric symptoms/ mental status changes	70	Confusion and memory problems Psychotic episodes (hallucinations and self-harm) Paranoia
Digestive system	70	Nausea and vomiting Bowel symptoms Diarrhea and constipation Loss of appetite
Paralysis and muscle weakness	60	Onset of long-term paralysis Muscle weakness Loss of sensation in lower limbs
Other symptoms	70	Collapsing (including ‘fits’, ‘passing out’, and ‘seizures’) and dizziness ‘Flu-like’ symptoms, such as joint stiffness, joint pain, coughing, and sweating Insomnia^a Dark urine Rashes

Note: ^aIt was unclear according to the patient if this was a symptom caused by an acute attack or by another cause

ISSN: 1750-1172