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Warning-sign checks

Primary amyloidosis: 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

    Call emergency services if you develop:

    • Severe or rapidly worsening shortness of breath
    • Chest pain, fainting, or loss of consciousness
    • New weakness on one side, facial drooping, or difficulty speaking
    • A very fast or irregular heartbeat with dizziness or chest discomfort
    • Coughing or vomiting blood, or heavy uncontrolled bleeding

    These symptoms can have causes other than amyloidosis, but they need immediate 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 treatment team promptly if you notice rapidly increasing swelling, a sudden weight increase from fluid, much less urine than usual, worsening dizziness, new palpitations, or increasing breathlessness.

    Some infections need same-day assessment.

    Contact the team sooner if they are progressing or interfering with eating, walking, sleep, or daily activities.

  3. 3

    Does any of this apply?

    Book an appointment

    Mention gradual changes—such as increasing fatigue, numbness, bruising, digestive symptoms, or reduced activity tolerance—at routine follow-up.

The article also says

If you are receiving treatment that affects the immune system, follow the instructions you were given about fever or signs of infection.

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