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  1. Anderson KE, Bloomer JR, Bonkovsky HL, et al. Recommendations for the diagnosis and treatment of the acute porphyrias. Ann Intern Med. 2005;142:439-450.
  2. Crimlisk HL. The little imitator-porphyria: a neuropsychiatric disorder. J NeurolNeurosurg Psychiatry. 1997;62:319-328.
  3. Thadani H, Deacon A, Peters T. Diagnosis and management of porphyria. BMJ. 2000;320(7250);1647-1651.
  4. Porphyria. Genetics Home Reference. http://www.ghr.nlm.nih.gov/condition=porphyria. Accessed May 12, 2010.
  5. Porphyria, Acute Intermittent. eMedicine.Medscape.com. http://emedicine.medscape.com/article/205220-overview. Accessed May 12, 2010.
  6. Elder GH, Hift, RJ. Treatment of acute porphyria. Hosp Med. 2001;62(7):422-5.
  7. Sassa S. Diagnosis and therapy of acute intermittent porphyria. Blood Rev. 1996;10 (1): 53-9.
  8. Herrick, AL; Moore, MR; McColl, KL; Cook, A; Goldberg, A. Controlled Trial of Haem Arginate in Acute Hepatic Porphyria. Lancet. 1989 Jun 10; 1 (8650):1295-7.
  9. Panhematin [Package Insert]. Lebanon, NJ: Recordati Rare Diseases; 2013.
  10. Watson CJ, PierachCA,Bossenmaier I, Cardinal R. Adv Intern Med. 1978;23:265-286.
  11. Pierach CA, Bossenmaier I, Cardinal R, Weimer M,Watson CJ. KlinWochenschr. 1980;58:829-832.
  12. Lamon JM, Frykholm BC, Hess RA, TschudyDP.Medicine (Baltimore). 1979;58:252-269.
  13. Lamon JM,et al. Clin Res. 1977;25(3):471A.
  14. McColl KEL, Moore MR,Thompson GG, Goldberg A. Q J Med. 1981;50:161-174.
  15. Porphyria, Acute Intermittent. Cigna website. Available at http://www.cigna.com/healthinfo/nord318.html. Accessed July 15, 2010.
  16. Albers, JW, Fink, JK. Porphyric Neuropathy. Muscle Nerve. 2004 Oct;30(4):410-22.
  17. Anderson, KE. Approaches to Treatments and Prevention of Human Porphyrias. In: Kadish, KM, Smith, KM, Guilard, R, eds. The Porphyrin Handbook. Volume 14/ Medical Aspects of Porphyrins. San Diego, CA: Academic Press; 2003; 247-275.
  18. Palmer K. Abdominal Pain Due to Acute Intermittent Porphyria. Dimensions of Critical Care Nursing 2006; 25(3): 103-109.
  19. Data on file: Recordati Rare Diseases Lebanon, NJ

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Steps to helping take charge of your condition

Having Acute Intermittent Porphyria (AIP) can seem overwhelming. There are a number of steps you can take to help manage your AIP.

Identifying & managing triggers

Many potential attack triggers have been identified. Knowing which of these are likely to cause an attack is an important step toward managing your AIP.

  • 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. Although pregnancy increases the levels of some hormones that have been linked to AIP–associated attacks, most pregnant women do not experience increased attacks.1
acute intermittent porphyria education information

Learn about AIP

Get educated about this rare disease and help take charge of your condition.

Help take charge of your condition

Another way to take charge of your condition is to make sure you get the care you need. Here are few simple steps you can take:

  • 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.
  • 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

Read getting the right care for more tips.