EPP

Treatment

Patients with EPP have found that topical sunscreens, which are effective in protecting against hypersensitivity to the sunburn spectrum of light, are ineffective as protective agents. Various systemic agents, such as antimalarials, inosine and vitamin E, have been tried but with little success.

Orally administered pharmaceutical grade beta carotene has been found to improve the photosensitivity associated with the disease. The majority of patients are able to increase their ability to tolerate sunlight by at least three times after taking beta carotene. (LUMITENE, Tishcon Corp., 60 to 180 mg per day, by mouth). No side effects have been reported other than transient loose stools in a few patients and carotenodermia (yellowing of the skin), which was not cosmetically offensive to the majority of the patients. To order LUMITENE by email, contact info@epic4health.com.

It is important for EPP patients to ingest the proper formulation of beta carotene to obtain its greatest beneficial effect. It is also important to make sure that the preparation is a pharmaceutical grade formulation. The form having the highest effective absorbtion is the "dry beta carotene beadlets, 10" manufactured by Hoffmann-LaRoche. These are used in LUMITENE, the Tishcon Corporation's preparation previously discussed. You may order LUMITENE directly from E.P.I.C., a subsidiary of the Tishcon Corporation. Their special telephone number for EPP patients calling from within North America is 1-800-866-0978.

Vitamin A toxicity will never occur from the ingestation of high doses of beta carotene. Please also note that preperations using beta carotene crystals dissolved in vegetable oil are not suitable for use in treating EPP because these preparations are erratically absorbed by the body.

A high intake of carotenoid-containing foods as a method of obtaining high levels of blood and skin carotenoids is not recommended. Toxic reactions, such as leukopenia (any situation where the number of leukocytes in the circulating blood is less than normal) and methemoglobinemia (presence of metheglobin in the blood) occur in those who ingest large quantities of vegetables in the amounts that would be necessary to obtain a protective effect. When purified beta carotene is used, neither of these toxic reactions has occurred, indicating that the reactions were probably due to the constituents of the vegetables other than the carotenoids.

Patients with EPP may develop liver abnormalities due to an excess deposition of protoporphyrin in that organ. Hence, drugs which can impair bile flow, cholestasis, as well as estrogens, should be given cautiously. Cholestyramine ingestion may lower porphyrin levels in some patients.

Some patients with EPP report that drinking alcoholic beverages increases their photosensitivity. It is probably wise for all EPP patients to avoid or greatly reduce alcohol consumption.

Individuals with EPP may also need to wear protective clothing, such as garments with long sleeves and trousers: each one has to decide the amount of this sort of protection needed. Certain kinds of material such as denim, are quite light protective. Also certain plastic materials, such as Scotchtint, filters out harmful rays and can be used on home and automobile windows.