Porphyria Cutanea Tarda: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Porphyria Cutanea Tarda?
A dermatologist, a doctor who treats skin conditions, often sees people with porphyria cutanea tarda. A hematologist (a blood doctor) or a hepatologist (a liver doctor) may also help. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is porphyria cutanea tarda?
Porphyria cutanea tarda, or PCT, is a rare skin disorder. It causes painful, blistering sores on skin that is exposed to the sun. The skin is fragile and may peel or blister after a minor bump. Liver problems may also occur.
PCT belongs to a group of disorders called the porphyrias. It is caused by low levels of an enzyme, which is a protein that does a chemical job in the body. The enzyme is called UROD. PCT is the most common type of porphyria. It affects about 5 to 10 out of every 100,000 people.
Symptoms
The main symptoms affect the skin. Blisters appear on skin that is often in the sun, such as the hands and face. The sores may crust over. Skin can scar, and it may darken or fade in color. Extra hair growth, especially on the face, may also occur. Small bumps with a white head may form on the backs of the hands.
PCT can also harm the liver. It can raise the chance of cirrhosis, which is scarring of the liver, and of liver cancer. Blisters or wounds can become infected.
Causes and who gets it
PCT has more than one cause. Genes and outside factors work together. In about 75% to 80% of cases, the low enzyme level is acquired. This means it is not passed down from a parent. In the other cases, a person has a change in the UROD gene. Most people with this change do not get PCT.
Factors that can lead to PCT include:
- a buildup of iron in the body
- heavy alcohol drinking
- smoking
- infections with hepatitis C or HIV
- taking estrogen, which is found in birth control pills and hormone replacement therapy
Iron plays a central role in most people. Hemochromatosis, a disorder where the body stores too much iron, is linked to PCT. PCT most often develops in people older than age 40, usually men.
How doctors diagnose it
Doctors look at your symptoms, your health history, and an exam. They also use special tests. Tests measure porphyrins in your blood, urine, or stool. Porphyrins are the chemicals that build up in porphyria. A blood test can tell PCT apart from variegate porphyria and erythropoietic protoporphyria, which are other types of porphyria.
Genetic testing is available for the inherited type once the diagnosis has been confirmed in the patient or a family member.
Treatment
PCT is the most treatable form of porphyria. The standard treatment is regular phlebotomies. A phlebotomy removes blood through a vein. This lowers iron and porphyrin levels in the liver. Regular phlebotomies usually lead to complete remission in most people. Remission means the symptoms go away. The disease can come back, and it is treated the same way again.
Some people take low doses of hydroxychloroquine or chloroquine, which are malaria medicines. This is usually kept for people who cannot have phlebotomies. These medicines can cause serious side effects, including seizures, muscle weakness, and damage to the retina of the eye. The retina is the lining at the back of the eye. An eye exam is advised before and after treatment. They should not be used during pregnancy or while breastfeeding.
People with PCT are advised to avoid triggers, such as alcohol and smoking. Protecting the skin from sunlight may mean long sleeves, wide-brimmed hats, gloves, and sunglasses. Pain relievers can treat painful skin sores, and antibiotics can treat skin infections.
PCT can raise the risk of liver cancer. Your doctor may suggest blood tests and an ultrasound or other imaging test to check for it.
When to see a doctor
See a doctor if your skin blisters or peels easily, especially on areas that are in the sun. Get care soon if blisters or wounds look infected. Antibiotics can treat skin infections. If you take hydroxychloroquine or chloroquine, tell your doctor about blurred vision, light sensitivity, or seeing halos around lights. These can be signs of retina damage.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either kind of doctor can start an evaluation, order first tests, review your medicines, and help you reach a skin or liver specialist.
Common questions
Is porphyria cutanea tarda inherited?
Usually not. In about 75% to 80% of cases, the low enzyme level is acquired, not passed down. In the other cases, a person has a UROD gene change, but most people with that change do not develop PCT.
Can porphyria cutanea tarda be treated?
Yes. NORD calls PCT the most treatable form of porphyria. Regular phlebotomies usually lead to complete remission in most people, but the disease can come back.
Why does the skin blister in the sun?
Porphyrins build up in the skin and take in sunlight. This causes the skin damage seen in PCT.
Can alcohol and smoking play a role in PCT?
Yes. Heavy alcohol drinking and smoking are both listed as factors that can lead to PCT. People with PCT are advised to avoid triggers such as alcohol and smoking.
Sources
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
