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Warning-sign checks

Primary immunodeficiency: 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. 1

    Is any of this happening now?

    Call 911

    Follow any condition-specific emergency plan you have been given.

    People with severe immune deficiencies may need assessment earlier than someone with a healthy immune system.

    Call emergency services for severe breathing difficulty, blue or grey lips, confusion, collapse, a seizure, extreme difficulty waking, or signs of a rapidly worsening infection.

    A stiff neck with fever, a non-fading rash, or severe dehydration also needs emergency assessment.

    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. 2

    Is any of this happening?

    Be seen today

    Contact your usual medical team promptly if:

    • A fever or infection is worsening rather than improving
    • You cannot keep down fluids or medicines
    • A wound becomes increasingly red, painful, or swollen
    • You develop a new persistent cough, breathlessness, or chest pain
    • You have been exposed to a significant infection covered by your care plan
  3. 3

    Does any of this apply?

    Book an appointment

    Routine follow-up is important even when you feel well.

    Arrange a non-urgent review if infections are becoming more frequent, your usual treatment is less effective, or new symptoms such as weight loss, persistent diarrhoea, swollen joints, or ongoing cough appear.

    And for anyone, someone who:

    • has noticed a lump, a mole that has changed, or unexplained weight loss

Every sign above is quoted from the sofidex article on Primary immunodeficiency. If you are not sure, err upward — it is always reasonable to be checked.