Patient Comments: Porphyria - Symptoms

Describe the symptoms you have experienced with porphyria.

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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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: Tan Man, 55-64 Male (Patient) Published: April 11

I"m an oil field service technician in south Texas, that means I"m in the sun a lot and work with my hands. I'm looking for anything that will help the burning/blistering/fragile skin. My first treatment for porphyria was on 1/3/14. I have had 6 blood drainings this year, how long until I see some relief!

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Comment from: Charles, 65-74 Male (Patient) Published: October 15

I get itchy pimples all over my body. I can't sleep at night and it affects my vision. I also get sinus blockage and shortness of breath.

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Comment from: trish, 55-64 Female (Patient) Published: November 18

I have porphyria and lately I am getting a very itchy rash across my chest and wonder if this could be related.

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Comment from: Yevette, 45-54 Female (Patient) Published: May 31

I break out from only five minutes in the sun. It doesn't matter if its winter or summer. My face has swelled up. I itch constantly. My urine changes color, I have abdominal pain, blisters, and loose stool.

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Patient Comments

Viewers share their comments

Porphyria - Treatment Question: Have you tried an effective treatment for porphyria?
Porphyria - Types Question: What type of porphyria do you have? Please discuss your experience.
Porphyria - Diagnosis Question: Describe the events that led to a diagnosis of porphyria.

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