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Prevention and Treatment

Once a person is known to have a particular porphyria, there are precautions that can be taken to limit or prevent signs and symptoms from occurring.

For the acute neurological porphyrias (AIP, VP and HCP), the most important precaution is to avoid using drugs that are known to precipitate attacks. Lists of drugs that are considered safe and unsafe for people with a neurologic porphryria are available. (See the drug lists on the web sites in the Related Pages section of this article.) If attacks are related to the menstrual cycle, hormone therapy to change the menstrual cycle may prevent attacks. Avoidance of strict dieting may be important in some people.

For people having an attack, treatment involves identifying and removing any precipitating factors, giving an intravenous infusion of a heme derivative such as hematin or heme arginate, and supplying enough nutrition by intravenous infusion if necessary. Intensive medical care may be required in severe cases.

People with PCT need to avoid alcohol consumption. Sun protection with clothing and complete sunblock lotions is also very important. The treatment for PCT is phlebotomy (removal of blood), which rids the body of excess iron. People who do not have hepatitis or other transmissible diseases may become regular blood donors. Patients who cannot tolerate phlebotomy may be treated with chloroquine to help remove excess porphyrins.

Children and adults with EPP benefit from sun protection with clothing that blocks lights in the ultraviolet part of the spectrum. Conventional sunscreens have limited effectiveness. Treatment with beta-carotene may reduce sun sensitivity and skin symptoms.

People with VP and HCP need to take the same precautions as people with AIP to avoid neurological symptoms. They also need sun protection with clothing and sunblock lotions if they suffer from sun sensitivity.

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