Aa
A
A
Close
Avatar universal
Porphyria Cutanea Tarda
Has anyone been diagnosed with Porphyria Cutanea Tarda?  I developed this disease several months ago which led up to my being tested for Hep C and was found to have the antibodies.  Haven't gotten the results back on geno or viral load yet and had liver biopsy done yesterday.  Doc says because I have the Porphyria more than likely have active hep.  Porphyria causes fragile skin especially on the backs of hands and blisters with exposure to the sun.  Liver damage usually occurs so a little anxious about biopsy results.  Treatment for porphyria is phlebotomy sessions or low doses of chloroquine.  If i need to treat for hep wondering if I should treat for porphyria first?  Confusing right now and wondering if anyone has experienced the same problems.
Thanks,
Trinity
Cancel
6 Answers
Page 1 of 1
Avatar universal
My sister has the same thing, she was diagnosed 10 years ago, she has blisters on her hands which she refers to as "break outs".  she seems to get them when she injures her hand or is out in the sun.  She is in a study now that is really working wonders for her. When she first got this they pulled her blood I think once a week to get her iron down. She also was getting treated for Hep C with peg/riv but she had to stop because her white blood count got too low, they decided to treat the porphyyria first then the hep c.  Hope that helps you.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Avatar universal
I know someone who has this and there is an over the counter lotion you can apply which really helps, i will send you a message with the name of it as soon as i here back from him. Poryphuria is generally brought on from hep c if you have a genetic predisposition for the disease. (german descent). I know he has occassional phlebotomy and has his iron levels checked frequently. Good Luck
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Avatar universal
Sorry ment to address post to you.....Leah
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Avatar universal
Thanks for the info.  We are of german descent.  They told  her it was heratitary and that people with hep c get it.  I would love to know the name of the lotion so I can tell her.  She has a lot of scars from so many break outs.  She also refuses to quti drinking a bottle of wine everyday,  I don't think that is helping anything.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Avatar universal
Alchol brings on the blisters, my friend had to quite drinking and the skin problems improved greatly. I will send you a message too.   Leah
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Your Answer
Avatar universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
Submit Answer
A
A
Recent Activity
317787 tn?1468754865
Blank
Dee1956 commented on Jade59's status
2 hrs ago
317787 tn?1468754865
Blank
Dee1956 commented on meegWpaw's status
13 hrs ago
317787 tn?1468754865
Blank
Dee1956 commented on meegWpaw's status
13 hrs ago
Blank
Weight Tracker
Track your weight over time
Start Tracking Now
Top Hepatitis Answerers
317787 tn?1468754865
Blank
DC
163305 tn?1333672171
Blank
Rural Mural, CA
446474 tn?1446351282
Blank
San Francisco, CA
Avatar universal
Blank
1747881 tn?1358189534
Blank
Greeley, CO
2059648 tn?1439770265
Blank
Hepatitis C Community Resources