WHAT YOU SHOULD KNOW:
Acute porphyria is a disorder that affects how your body makes red blood cells (RBC). Your body needs a chemical called porphyrin to make heme, a part of RBC that carries oxygen. Porphyria prevents your body from creating enough enzymes to control the process, and porphyrin builds up. High levels of porphyrin can cause problems throughout your body, depending on where it builds up. Low levels of heme can also cause organ damage, because your blood cannot bring the organs enough oxygen.
You may be given medicines to treat porphyria or to manage your symptoms. Take your medicines as directed. Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Keep the list with you in case of emergency. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits.
Follow up with your primary healthcare provider or hematologist as directed:
If you have a liver or kidney disease, it is especially important to keep all appointments. Write down your questions so you remember to ask them during your visits.
Prevent an acute porphyria attack:
- Do not smoke cigarettes or drink alcohol: Cigarettes and alcohol can trigger an attack. They may also damage your liver and further worsen your condition. Talk to your primary healthcare provider if you have trouble quitting smoking or drinking.
- Reduce stress: Physical and mental stress can trigger an attack. Talk to your primary healthcare provider about ways you can reduce stress.
- Be careful with medicines: Certain medicines can trigger an acute porphyria attack, so ask your primary healthcare provider about the medicines you take.
- Eat enough food: You can trigger an attack if you do not eat enough, especially if you cut out carbohydrates. Ask your primary healthcare provider how much you should eat each day. You may need to work with a dietitian to create a food plan.
Contact your primary healthcare provider or hematologist if:
- You vomit everything you eat or drink.
- You have a fever.
- You get a skin blister or lesion when your skin is exposed to light.
- You have questions or concerns about your condition or care.
Return to the emergency department if:
- You have pain in your abdomen, chest, or back.
- You have signs of dehydration, such as urinating less or not at all.
- You cannot eat or drink.
- You are confused, groggy, or weak.
- You have a seizure.
- You have trouble breathing or walking.
- You cannot move one side of your body.
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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.