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Porphyria Cutanea Tarda

WHAT YOU NEED TO KNOW:

What is porphyria cutanea tarda?

Porphyria cutanea tarda (PCT) is a disorder that causes skin to form blisters or lesions when exposed to sunlight. PCT is a form of porphyria, a disorder that affects how your body makes red blood cells (RBC). A chemical called porphyrin builds up in your skin. Proteins are released that cause the skin to become overly sensitive to sunlight. Skin lesions or blisters form where the skin was exposed to sunlight. PCT can be genetic or caused by exposure to certain chemicals or infections.

What increases my risk for PCT?

  • Cigarettes or alcohol
  • Infections caused by viruses, such as hepatitis C or HIV
  • Iron-related diseases, such as hemochromatosis
  • Hemodialysis to filter the blood for long-term kidney failure
  • Exposure to toxic chemicals
  • Type 2 diabetes
  • Birth control pills and estrogen hormone therapy for treating prostate cancer

What are the signs and symptoms of PCT?

The signs and symptoms are mostly in the skin and are worse during summer. You may have any of the following:

  • Blisters on exposed skin that can become crusted, scarred, and take a long time to heal
  • Delicate skin that is easily damaged by small injuries, such as scratches or burns
  • Skin color that is too light or too dark
  • More hair growth on your face, or no hair growth on your scalp

How is PCT diagnosed?

Your healthcare provider will ask about your symptoms. He or she will ask about your medical history and family medical history. Samples of your blood, urine, or bowel movement may be collected. Blood tests check for the enzymes needed to control RBC production, and your porphyrin level.

How is PCT treated?

Healthcare providers may suggest that you avoid the conditions and substances that trigger PCT. You may also need any of the following:

  • Malaria medicines remove excess porphyrins from your liver.
  • Phlebotomy is a procedure used to remove blood through your vein. This decreases the porphyrin levels in your liver and blood.

How can I prevent a PCT attack?

  • Do not smoke cigarettes or drink alcohol. Talk to your healthcare provider if you have trouble quitting smoking or drinking.
  • Be careful with medicine. Ask your healthcare provider if any of the medicines you are taking can trigger a PCT attack. Always check for skin changes when you take your medicines.
  • Protect your skin. Keep your skin protected from sun and scratches. Wear lightweight, loose, and light-colored clothing. Protect your head and neck with a hat or umbrella when you are outdoors. Wear sunscreen that has a sun protectant factor (SPF) approved by your healthcare provider. Follow the directions on the label when you use sunscreen.

Call your local emergency number (911 in the US) if:

  • You have a fast heartbeat or chest pain.
  • You have sudden trouble breathing.

When should I call my doctor?

  • You have a fever.
  • You have chills or a cough, or feel weak and achy.
  • You have pain, redness, or swelling around your skin blisters.
  • Your skin blisters have a bad smell or pus coming out of them.
  • You have questions or concerns about your condition or care.

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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Further information

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