Learning to Live with AIP

Learning to Live with AIP

Managing Attacks Begins with Recognizing Triggers

Having acute intermittent porphyria (AIP) can seem overwhelming. There are two key ways you can help make life with AIP more manageable—recognizing triggers of an attack and managing attacks when they do occur. Each person experiences AIP differently and each may have different triggers for attacks. Knowing which of these are likely to cause an attack is an important step toward managing your AIP.3

  • Medications—Many over-the-counter and prescription medications are thought to trigger attacks in some people with acute intermittent porphyria. Ask your doctor to help you determine which medications are right for you.1
  • Alcohol & drugs of abuse—Alcohol use should be avoided, as should illicit drugs, including marijuana, ecstasy, amphetamines, and cocaine.2,3
  • Smoking—Cigarette smoking is associated with more frequent attacks and should be avoided.1
  • Dieting—Sudden or prolonged low energy diets should be avoided.3 People with AIP are encouraged to consult with a nutritionist and to maintain a well-balanced diet with enough calories to maintain weight.1
  • Physical & emotional stress—Physical stress, related to infections or surgery, and emotional stress have been recognized as potential triggers for AIP attacks.1
  • Hormones—The luteal phase of the menstrual cycle has been linked with attacks in some women. Pregnancy is usually well-tolerated, but may increase attacks in some women.1

Some of these factors are best managed in collaboration with your doctor, such as the medications you take for an illness, as well as the medications you use to manage the signs and symptoms of your AIP.

Talk to your doctor to learn more about how you can take charge of your condition and manage the factors you can control, such as diet, smoking, stress, and other medications.

Being Prepared for Unpredictable Attacks

Because attacks may be unpredictable, it is possible that you will find yourself dealing with a new hospital or set of physicians. You may want to bring the following with you:

  • Diagnostic confirmation (test results or physician letters).
  • Wear a medical alert bracelet. Medical personnel, who might not otherwise be familiar with the management of AIP, will be alerted to treatments you need and treatments you must avoid.1
  • Keep records of your AIP-related test results and treatment recommendations. Bring them with you if you visit a new doctor to reduce the chances of repeat testing or confusion in management of your AIP.
  • A list of your current medications, their dosages, and when you take them.
  • AIP treatment information (articles, website links).
  • Seek treatment early for an attack. Many therapeutic and symptom relief interventions are most effective if started early in the progression of an attack.1

Educating Your Friends and Family About AIP

Acute intermittent porphyria (AIP) is rare. If you’ve been diagnosed with AIP, or if you’ve been told you may have AIP, there’s a good chance you’re the only person you know who has been diagnosed with this disorder. Even so, you are not alone. There are people all over the US with AIP, and there are associations and groups ready to help.

Because most people with acute intermittent porphyria rarely or never experience symptoms, your family members may be carriers of the defective gene and should consider testing for AIP.2 Different types of testing, such as DNA testing, may be used for family members who do not have signs and symptoms.1

Family members who are identified as carriers of the defective gene should be educated on the triggers for attacks so they can make lifestyle modifications to reduce the possibility of attacks.1

Educating your family also means they can help you avoid environmental and lifestyle triggers. They can also help by providing information to medical staff and support you if you have to go to the hospital for an attack.