Patient Comments: Porphyria - Symptoms

Question:

Describe the symptoms you have experienced with porphyria. Submit Your Comment

Comment from: Catwoman , 65-74 Female (Patient) Published: August 08

With coproporphyria I have skin burning, numb arms and legs, migraines, depression, paranoia; abdominal, back, extremity and muscle pain; many drug allergies including a cardiac arrest after lidocaine; severe nausea, vomiting, diarrhea, constipation; and ischemic bowel. I developed a permanent fast heart rate with arrhythmias. I've developed polysomnia and take stimulants at 4 am to wake up by 8 am. I have lupus and Sjogren’s now.

Comment from: Johnmsundahl, 45-54 Male (Patient) Published: October 16

Over my life I was hospitalized maybe 100 times for stomach pain, vomiting and many stomach operations. Since the diagnosis of porphyria I am much better but the pain still comes and there is very little to do other than waiting it out.

Comment from: Hathor713, 35-44 Female (Patient) Published: September 07

I have had frequent bouts of abdominal pain and vomiting since I was a young child. As far back as I can remember I would throw up at least three times a week and missed school often. I had flu-like body aches all the time and was always tired. I also would get strange rashes and blisters on my fingers, hands, arms, chest, legs and feet. I also got rheumatic fever at age 9 and suffered severe joint damage, leaving me with rheumatoid arthritis at age 9. I was hospitalized many times in my life for abdominal pain of unknown etiology, severe vomiting, severe body pain, and migraine. I began to have a constant fast heart rate and was diagnosed with tachycardiac arrhythmia at 24. I also found out I had pernicious anemia at age 24 which caused severe neuropathy in my extremities. After showing my rheumatologist hundreds of pictures of my rashes, he immediately said it looked like porphyria. I was 34 at the time and now am 36. I have also developed inflammatory bowel disease, which is and so is the anemia related to porphyria. He thinks it is PCT (porphyria cutanea tarda), but I am showing signs in my blood work of other types of porphyria. Even when I am not having an active attack, I have chronic daily body aches and fatigue. Porphyria really hurts!

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.

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.

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!

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.

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.

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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