About Acute Intermittent Porphyria (AIP)

AIP is a rare inherited disease that can cause serious symptoms that affect your body, such as your brain and nervous system. The most common symptom is severe abdominal pain. There is no cure for AIP, but it can be managed.

What are common signs and symptoms of AIP?

Severe abdominal pain: the most common AIP symptom

The most common symptom of AIP is severe abdominal pain that usually cannot be relieved with pain medicine such as Advil® (ibuprofen) or Tylenol® (acetaminophen). More than 85% of people who develop AIP symptoms have abdominal pain.

Experiencing symptoms is known as having an “AIP attack.” Symptoms may occur for a set period of time, then go away – only to come back later.

Common AIP symptoms

Symptoms can occur in many different areas of your body during an AIP attack. These include:

GASTROINTESTINAL (GI) SYMPTOMS

  • Abdominal pain
  • Vomiting
  • Constipation
  • Diarrhea

Other common AIP symptoms

Symptoms can also occur in many different areas of your body during an AIP attack. These AIP symptoms are also common in other conditions. Having one or many of these symptoms does not mean that you have AIP. But it’s important to have your symptoms checked by a doctor right away.

URINARY SYSTEM SYMPTOMS

  • Dark-colored urine
  • Red urine

Other common AIP symptoms

Symptoms can also occur in many different areas of your body during an AIP attack. These AIP symptoms are also common in other conditions. Having one or many of these symptoms does not mean that you have AIP. But it’s important to have your symptoms checked by a doctor right away.

BRAIN OR NERVOUS SYSTEM SYMPTOMS (NEUROLOGICAL SYMPTOMS)

  • Pain in your arms, hands, legs, feet, back, chest, neck, or head
  • Weak muscles
  • Trouble breathing
  • Psychological symptoms (such as minor behavioral changes, anxiety, confusion or depression)
  • Convulsions

Other common AIP symptoms

Symptoms can also occur in many different areas of your body during an AIP attack. These AIP symptoms are also common in other conditions. Having one or many of these symptoms does not mean that you have AIP. But it’s important to have your symptoms checked by a doctor right away.

HEART OR BLOOD VESSEL SYMPTOMS (CARDIOVASCULAR SYMPTOMS)

  • Fast heart rate
  • High blood pressure
  • GASTROINTESTINAL (GI)
  • URINARY SYSTEM
  • BRAIN OR NERVOUS SYSTEM
  • HEART OR BLOOD VESSELS

Early diagnosis and treatment of AIP are critical

AIP attacks can be very serious. And symptoms may get worse over time. Untreated attacks can cause serious damage to your nervous system —including paralysis, and even death. That's why early diagnosis and treatment of AIP is so important.

If you have any of the symptoms listed above, talk to your doctor right away.

What triggers AIP attacks?

  1. Steroid hormones, particularly estrogen and progesterone. These hormones fluctuate the most during the 2 weeks before a woman’s menstrual periods start.
  2. Unhealthy behaviors such as drinking alcohol, smoking, or using illegal drugs.
  3. Stress on the body caused by infections, surgery, or physical exhaustion.
  1. Certain prescription drugs. Attacks can also be triggered by starting a new prescription drug.
  2. Changes in eating patterns such as fasting or crash dieting.
  3. Mental stress or emotional exhaustion.

If you have attacks of severe abdominal pain or other symptoms that seem to be triggered by any of the factors above, talk to your doctor right away.

What causes AIP?

AIP is caused by a partial lack of an enzyme known as porphobilinogen deaminase (PBGD). An enzyme is a type of protein that helps to regulate the bodys tissues and organs. Enzymes carry out almost all of the thousands of chemical reactions that take place in cells.

If you have AIP, you have about half of the normal amount of PBGD in your body. This is usually enough for your body to do what it is supposed to do. But triggers like those listed above can upset your body's chemical balance enough to cause symptoms.

Learn about a treatment for repeated acute AIP attacks

Questions for your doctor Download our helpful checklist About PANHEMATIN Learn how PANHEMATIN treats AIP

TAKE STEPS TO HELP MANAGE YOUR AIP:

  • Try to identify your possible triggers. Then try to reduce or avoid as many as you can. If you continue to experience attacks, keep writing down suspected triggers. Look for patterns of things that occurred right before an attack to identify any changes you can make. Talk to your doctor if you need help.
  • Be careful when changing your eating patterns. If you want to lose weight, get advice from your doctor or nutritionist before starting any diet.
  • Call your doctor at the first sign of an attack. Repeat attacks are often similar. They may start the same way and you may have the same symptoms.
  • Wear a medical alert bracelet. Doctors need to know about your AIP so that they do not prescribe drugs that may make your AIP worse.