PAH Symptoms

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What you may be experiencing

Common symptoms of PAH can include the following:

  • Chest pain
  • Shortness of breath
  • Dizziness
  • Fatigue
  • Swollen abdomen
  • Swollen ankles
  • Irregular heartbeat
  • Lightheadedness, fainting

At first, you may have hardly noticed your symptoms. But as PAH progresses, you may find it difficult to perform routine activities. You may feel worn out, and you may even faint.

Whether you are newly diagnosed, or you have been living with PAH for several years, your healthcare provider will continually monitor your symptoms. Your symptoms are an important source of information for diagnosis and management of PAH.

When discussing your symptoms with you, your healthcare provider may decide to run tests to help establish or confirm a PAH diagnosis.

Diagnosis & Testing

Do you have symptoms of PAH?

Tell your healthcare provider about your symptoms

PAH is rare, so these symptoms can be easy to overlook. That’s why it’s important to talk to your healthcare provider about any symptoms you experience, no matter how minor they seem.

Once you are diagnosed, your healthcare provider continues to watch your symptoms to see how well you are doing and to determine which treatments might be effective for you.

Knowing your symptoms—and how they change with daily activities—is important information that helps your healthcare provider understand how you are doing today and how you will be doing in the future.

Knowing your symptoms

Watch Dr. Lana Melendres-Groves as she explains more about the symptoms you may experience with PAH.

Click to expand transcript

Knowing about the symptoms you experience and when you experience them helps your healthcare provider assess whether your condition is improving, staying the same, or getting worse. This is key to determining the right treatment plan. You are likely familiar with at least some of the PAH symptoms like shortness of breath, a rapid, hard, irregular heartbeat, chest pain, swollen ankles, a swollen abdomen, or even dizziness and fainting. Over time, as the disease progresses, the symptoms get worse and you may find that you cannot do as much physically. It’s important to note that symptoms may not always reflect whether PAH is progressing or how it is affecting your body. Even if your symptoms remain the same, there still may be more you can do to help improve how you feel. Sometimes people with PAH try to ignore their symptoms until they become more extreme, but when it comes to PAH, it’s important to speak with your doctor about how you are doing.

Effectively treating PAH sooner rather than later can make a difference in how quickly your PAH progresses. So it’s important to be your own advocate and to find an experienced PAH doctor. Not all pulmonologists and cardiologists have specialized PAH training, so it’s important to find a PAH doctor who understands each of the available PAH medications.

The PAH symptom checklist

What symptoms are you experiencing?

Take a look at the bulleted list below. Are you experiencing any of these symptoms?

  • Shortness of breath/Difficulty breathing
  • Rapid, hard, irregular heartbeat
  • Chest pain
  • Swollen abdomen
  • Swollen ankles
  • Other

Taking a closer look at your symptoms

Are your PAH symptoms making it difficult for you to participate in everyday activities? If your symptoms are staying the same or not getting better, your PAH may not be adequately controlled.

Review the list below. How do you usually feel during each activity?

Yardwork

Yardwork image
  • Few or no symptoms
  • Moderate symptoms
  • Severe symptoms

Shopping

shopping
  • Few or no symptoms
  • Moderate symptoms
  • Severe symptoms

Doing laundry

doing laundry
  • Few or no symptoms
  • Moderate symptoms
  • Severe symptoms

Walking up stairs

walking up stairs
  • Few or no symptoms
  • Moderate symptoms
  • Severe symptoms

Walking the dog

walking the dog
  • Few or no symptoms
  • Moderate symptoms
  • Severe symptoms

Preparing a meal

preparing a meal
  • Few or no symptoms
  • Moderate symptoms
  • Severe symptoms

Fill out your own symptom checklist

If you’re still experiencing symptoms, or your symptoms are not improving, download and complete your own symptom checklist below and bring it to your next appointment.

Talk to your healthcare provider about the symptoms you’re experiencing so they can assess your treatment plan and consider whether any changes are needed.

Download Checklist

Improving your symptoms could have a positive effect on your risk status.

What Is Risk Status?

Talking to your healthcare provider about your symptoms

PAH gets worse over time. If you notice your symptoms changing, discuss those changes with your healthcare provider. It might be time to adjust your treatment.

Your healthcare provider needs to know how you’re feeling, what concerns you have, and what’s happened since your last visit. This information can help your healthcare provider make decisions about whether to adjust the dose of your medication or add medication to control your symptoms.

The PAH Initiative offers a PAH Doctor Discussion Tool (right) that can help you start conversations with your healthcare provider. You can do your part by printing and filling out this tool, then discussing it at your next appointment.

PAH Doctor Discussion Tool

PAH Doctor Discussion ToolDownload

PAH knowledge is PAH power

True or false?

Difficulty breathing can be a symptom of PAH.

  • Right! Difficulty breathing can be a symptom of PAH. Other symptoms can include fatigue, chest pain, a swollen abdomen, swollen ankles, or an irregular heartbeat.

  • This one is true. Difficulty breathing can be a symptom of PAH. Other symptoms can include fatigue, chest pain, a swollen abdomen, swollen ankles, or an irregular heartbeat.

Breathing
Choose an answer

When you feel symptoms that could be related to PAH, you should:

  • Although sometimes you may feel like your symptoms are “probably nothing,” to ensure you are receiving effective treatment, your healthcare provider needs to know your symptoms—and how they change with daily activities.

  • Correct. To ensure your treatment is effective, your healthcare provider needs to know your symptoms—and how they change with daily activities.

Talking

Why is it important to improve your symptoms of PAH?

Improving your symptoms of PAH can have a positive effect on your risk status. Improving your risk status, in turn, can increase the chances that you’ll be doing better now and over the next 5 years.

What Is Risk Status?