Warning-sign checks
Porphyria: when to get help
Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911Seek emergency care for:
- Trouble breathing or rapidly worsening muscle weakness
- A seizure, fainting, severe confusion, or unusual drowsiness
- Severe abdominal pain with weakness, vomiting, or neurological symptoms
- Symptoms of an acute attack that are quickly getting worse
Tell the emergency team if you have diagnosed or suspected acute porphyria.
If available, bring your emergency plan or medical alert information.
Other emergency signs, for anyone
- Someone who is struggling to breathe, gasping, choking, or cannot get words out
- Someone who has chest pain, tightness or pressure lasting more than a few minutes
- Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
- Someone who is unconscious, or cannot be woken
- Someone who is bleeding heavily and it will not stop with firm pressure
- Someone who has had a seizure that will not stop, or does not wake up afterwards
- Someone who has lips or skin that look pale, blue, grey or blotchy
- Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen todayArrange prompt medical assessment for new blistering or painful light sensitivity, jaundice, persistent dark urine, or worsening upper abdominal pain.
These symptoms are not always caused by porphyria, but they should be evaluated.
Contact your usual care team sooner if attacks become more frequent or your established symptom pattern changes.
3
Does any of this apply?
Book an appointmentRoutine follow-up is used to review symptoms, check liver and kidney health, monitor treatment, and discuss safe medicines.
Every sign above is quoted from the sofidex article on Porphyria. If you are not sure, err upward — it is always reasonable to be checked.