Paroxysmal nocturnal hemoglobinuria: 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 911
Seek emergency care for symptoms that could indicate a blood clot, stroke, severe anemia, or serious infection.
These include:
Sudden shortness of breath, chest pain, coughing blood, or collapse
New one-sided weakness, facial drooping, confusion, or trouble speaking
A severe, unusual headache, seizure, or loss of consciousness
Severe abdominal pain, especially with swelling or vomiting
A painful, swollen, warm, or discolored leg or arm
Heavy bleeding that does not stop
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 today
If you take a complement inhibitor, fever, a new rash, severe headache, stiff neck, confusion, or rapidly worsening illness needs urgent medical assessment.
Meningococcal infection can progress quickly even after vaccination.
Contact your usual healthcare team promptly for increasing fatigue, breathlessness, dark urine, yellowing of the eyes, reduced urination, unusual bruising, or signs of infection.
3
Does any of this apply?
Book an appointment
Routine follow-up is appropriate for stable symptoms, planned blood tests, vaccination reviews, medication monitoring, and discussion of work, travel, pregnancy, or treatment side effects.
Every sign above is quoted from the sofidex article on Paroxysmal nocturnal hemoglobinuria. If you are not sure, err upward — it is always reasonable to be checked.