Aa
A
A
A
Close
Hepatitis C Community
13.3k Members
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
5 Responses
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.  
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
Avatar universal
Sorry ment to address post to you.....Leah
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.
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
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473362051
DC
683231 tn?1467326617
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.