Treatment depends on the type of porphyria you have and is directed at relieving symptoms.
Treatment of acute porphyrias focuses on providing rapid treatment of symptoms and preventing complications. This may require hospitalization in severe cases. Treatment may include:
- Stopping medications that may have triggered symptoms
- Medication to control pain, nausea and vomiting
- Prompt treatment of infections or other illness that may have caused symptoms
- Intravenous sugar (glucose) or sugar taken by mouth, if able, to maintain an adequate intake of carbohydrates
- Intravenous fluids to combat dehydration
- Injections of hemin, a medication that is a form of heme, to limit the body's production of porphyrin
Treatment of cutaneous porphyrias focuses on reducing exposure to sunlight and the amount of porphyrins in your body to help eliminate your symptoms. This may include:
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- Drawing blood (phlebotomy). Drawing a certain amount of blood from one of your veins reduces the iron in your body, which decreases porphyrins. You may need to have a phlebotomy repeated at regular intervals before cutaneous porphyria goes into remission.
- Medication. Drugs used to treat malaria — hydroxychloroquine (Plaquenil) or, less often, chloroquine (Aralen) — can absorb excess porphyrins and help your body get rid of them more quickly than usual. These medications are generally used only in people who can't tolerate a phlebotomy.
- Beta carotene. Long-term treatment of cutaneous porphyrias may include daily doses of prescription beta carotene. Beta carotene may increase your skin's tolerance to sunlight. Your doctor can tell you what kind of beta carotene will work best for porphyria photosensitivity.
- Reducing or eliminating triggers. Triggers, such as certain medications or too much sunlight, which activated the disease, should be reduced or removed if possible, with guidance from your doctor.
- Vitamin D. Supplements may be recommended to replace vitamin D deficiency caused by avoidance of sunlight.
- Information for professionals. The Porphyrias Consortium. https://rarediseasesnetwork.epi.usf.edu/porphyrias/professionals/index.htm. Accessed Feb. 7, 2014.
- Learning about porphyria. National Human Genome Research Institute. https://www.genome.gov/19016728. Accessed Feb. 7, 2014.
- Porphyria. National Digestive Diseases Information Clearinghouse (NDDIC). http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/. Accessed Feb. 7, 2014.
- Anderson KE. Porphyrias: An overview. http://www.uptodate.com/home. Accessed Feb. 7, 2014.
- Overview of porphyrias. The Merck Manuals: The Merck Manual for Health Care Professionals. http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/porphyrias/overview_of_porphyrias.html. Accessed Feb. 7, 2014.
- Porphyria. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/porphyria. Accessed Feb. 7, 2014.
- Riggin, EA. Decision Support System. Mayo Clinic, Rochester, Minn. Nov. 21, 2013.
- Panhematin hemin for injection (prescribing information). Lebanon, N.J.: Recordati Rare Diseases, Inc.; 2013. http://www.aiporphyria.com/. Accessed Feb. 12, 2014.
- Porphyrin tests. Lab Tests Online. http://labtestsonline.org/understanding/analytes/porphyrins/tab/sample. Accessed Feb. 17, 2014.
- Tracy JA, et al. Porphyria and its neurologic manifestations. Handbook of Clinical Neurology. 2014;120:839.
- Pittelkow MR (expert opinion). Mayo Clinic, Scottsdale, Ariz. March 17, 2014.
- Solberg LA Jr. (expert opinion). Mayo Clinic, Jacksonville, Fla. March 18, 2014.