Acute hepatic porphyria (AHP) is a rare blood disorder where your red blood cells don’t have enough heme to make hemoglobin. There are a variety of treatments available for the symptoms of an AHP attack to make you feel better and prevent complications. However, the best approach to managing your AHP is to know your triggers and avoid them when possible.
Know the most common triggers
If you’re newly diagnosed with AHP, you might not know what triggers your AHP attacks. Knowing some of the most common triggers can help you avoid them in the future and prevent attacks.
Some triggers are related to supplements and medications — such as iron supplements and hormones. Other triggers may be medical conditions, such as an infection. Long-term stress or a sudden high-stress event can also trigger an AHP attack.
Other AHP triggers are related to lifestyle habits. These include:
- excessive sunlight exposure (such as tanning)
- drinking alcohol
- tobacco use
Menstruation in women can also trigger an AHP attack. While unavoidable, your doctor may give you some medication before your cycle starts.
Double-check your meds
Certain medications can alter the way your red blood cells work, making AHP symptoms worse. Some common culprits include:
- iron supplements
- hormone replacements (including birth control)
Tell your doctor about any supplements and medications you take, even if they’re over-the-counter. Seemingly harmless medications might be enough to trigger AHP symptoms.
Dieting is a common way to lose weight, but extreme dieting can trigger AHP symptoms. Fasting can cause more severe symptoms.
There’s no such thing as an AHP diet, but eating fewer calories and eating less of certain foods can help you avoid attacks. According to the American Porphyria Foundation, common dietary culprits of AHP symptoms include Brussels sprouts, cabbage, and meats cooked on charcoal grills or broilers. However, there isn’t a comprehensive list. If you suspect any foods worsen your AHP, try to avoid them.
Take extra steps to avoid getting sick
When you get sick, your white blood cell count increases to fight off harmful bacteria and viruses. As a result, white blood cells will outnumber healthy red blood cells. When you’re already deficient in red blood cells, an infection-induced increase in white blood cells can trigger your AHP symptoms.
One of the best ways to avoid an AHP attack is to prevent illnesses as best you can. While the occasional cold is sometimes unavoidable, do your best to prevent catching germs. Follow these best practices:
- Wash your hands frequently.
- Get plenty of sleep.
- Avoid others who are sick.
Infections not only trigger AHP, but they can also make recovery more challenging, increasing your risk for complications.
Avoid too much sun exposure
Sunlight exposure is a common trigger of AHP. Symptoms of a reaction to sunlight usually occur on your skin and may include blisters. You might notice these on parts of your body that get the most sun exposure, such as the face, chest, and hands.
This doesn’t mean you can’t ever step outside during daylight hours. But you should try to avoid the sun when it’s at its peak strength. This is usually during the late morning and early afternoon. Wear sunscreen daily and wear a hat and protective clothing when you’re outside.
You should avoid any unnecessary UV ray exposure. You should avoid tanning beds and soaking up natural sun rays in hope of getting a tan, especially if you have AHP.
Make self-care a priority
Self-care means taking time to focus on your physical, emotional, and mental health. This can include healthy eating and exercising. Self-care can help reduce stress, which is one of the key triggers of AHP.
In relieving symptoms, self-care can also reduce chronic pain. Yoga, meditation, and other focused activities can teach you how to cope with pain and other uncomfortable AHP symptoms.
Refrain from unhealthy habits
Unhealthy lifestyle habits can increase AHP symptoms and complications. For example, avoid excessive alcohol consumption. Alcohol triggers attacks and can damage an already vulnerable liver. Liver damage is just one of the long-term complications of AHP, according to the Mayo Clinic. Kidney failure and chronic pain are two others.
You should also refrain from smoking and taking illicit drugs. These impact your body in numerous ways and can further deplete the oxygen your red blood cells need to keep your tissues and organs functioning.
Keep a journal
Knowing the common triggers of AHP is important. But what are your triggers? Not everyone with AHP has the same triggers, so learning your own can make a difference in managing and treating your condition.
Recording your symptoms in a journal is one of the most effective ways to help you figure out your AHP triggers. You can also keep a food diary to help determine any dietary causes of AHP symptoms. Keep a daily list of your foods and activities so you can take your journal to your next doctor appointment.
Know when to see your doctor
Avoiding AHP triggers goes a long way in managing of your condition. But sometimes you can’t avoid a trigger. If you suspect you’re having an attack, call your doctor right away. They may need to administer synthetic heme in their office. In worse cases, you may need to go to the hospital.
Symptoms of an AHP attack include:
- abdominal pain
- breathing difficulties
- chest pain
- dark-colored urine (brown or red)
- heart palpitations
- high blood pressure
- muscle pain
Call your doctor if you experience these symptoms. If you have severe pain, significant mental changes, or seizures, seek emergency medical care.