Porphyria - Symptoms

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What are the symptoms of porphyria?

People with cutaneous forms of porphyria develop blisters, itching, and swelling of their skin when it is exposed to sunlight. Symptoms of acute forms of porphyria include pain in the abdomen, chest, limbs, or back; numbness, tingling, paralysis, or cramping; vomiting; constipation; and personality changes or mental disorders. Acute attacks of porphyria can develop over hours or days and last for days or weeks.

Symptoms can vary widely in severity. Some people with gene mutations that can cause porphyria have no signs or symptoms of the disorder. These people are said to have latent porphyria.

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See what others are saying

Comment from: slotgirl, 55-64 Female (Patient) Published: August 21

I have just been diagnosed with porphyria cutanea tarda (PCT). I am looking for any information to help. I just read of a male who has had quite a few blood draws and no relief with the blisters. I am on my 4th blood draw and see no let up with the blisters. I was hoping someone here had some idea of any topical medication to help with burning, itching, and pain. I have been a sun worshiper for years and also now was diagnosed with the hepatitis C virus. I feel like my life is over. I can't think straight, have a terrible personality, and just want to be in bed 24 hours a day.

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Comment from: Kate, 55-64 Female (Patient) Published: January 08

It starts 2 or 3 days prior to the actual porphyria attack from stress or lack of carbohydrates or extreme fatigue. Then on the day of attack I get extreme nausea and then develop anxiety and have trouble thinking clearly. Pain then hits fast and hard, level 10. I am usually screaming by the time they get me to the emergency department.

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