If you have acute hepatic porphyria, symptoms from your attacks can hang around for quite a while. We don't know why this happens, but we do know that these chronic symptoms don’t respond as well to hemin, the main treatment for AHP.
Pain. The type that comes after a severe attack usually goes away. But some people have nerve damage that may cause lasting pain. If yours doesn’t get better, tell your doctor. They may refer you to a nerve specialist called a neurologist. You might also see a pain management specialist.
Persistent paralysis. Your doctor may call this residual paresis. Paralysis you have during an acute attack usually goes away with treatment. But for some people, it may be permanent. If yours is, along with medical treatment, your doctor will recommend several types of rehabilitation. These can include:
- Physical therapy (heat, massage, and exercise, for example)
- Occupational therapy, to learn ways to do day-to-day tasks
- Things to help you move around better, like wheelchairs, scooters, braces, walkers, and canes
- Helpful technology like special computers, lighting, telephones, and controls that could help you drive a car.
If you have severe symptoms, a liver transplant could be an option. Your doctor will let you know if it's the right thing for you.
Monitoring for Complications
Regular visits to your doctor (at least once a year) can help keep many of these chronic complications away. During your visits, you may have tests to watch for the more serious ones. Early treatment is crucial to help you take care of your condition as well as possible.
High blood pressure and kidney damage. Your doctor probably checks your blood pressure on a regular basis. You'll also have blood tests to see how well your kidneys are working. If you need them, blood pressure medicines will be started to treat the high blood pressure and protect your kidneys.
Liver cancer. To check for signs of liver cancer, your doctor may ask you to have an ultrasound every year once you turn 50. If you don’t have liver damage, you might have the test annually starting at 60.
Abnormal iron levels. Your doctor’s likely to check how much iron is in your blood regularly. If you have too much, your doctor may remove a small amount of blood from your system, a procedure called phlebotomy. Doing this will give your body fewer iron-rich red blood cells, which will get your levels down.
Some people with AHP have severe attacks that can lead to long-term complications. Others have few symptoms. And still others have ones that can be well-controlled with preventive measures and prompt treatment. In general, the outlook for many people with AHP is good.