Whether you have just been diagnosed or are several years into life with pulmonary arterial hypertension (PAH), you may have questions about your treatment options. PAH symptoms like dizziness and fatigue can make it difficult to get the most out of your medical visits, but knowing what questions to ask can help you feel more in control and organized when talking with your pulmonologist (doctor who specializes in the respiratory system).

Consider asking the following eight questions to guide your conversations about PAH treatment.

1. How Often Should I See a Doctor?

Managing a chronic condition like pulmonary arterial hypertension (PAH) often means regular doctor visits, which can be stressful if you’re unsure how often you need to go. Given that PAH can progress quickly, it’s crucial to detect changes early. Regular checkups allow your doctor to closely monitor your symptoms and adjust your treatment plan as needed.

Given that PAH can progress quickly, it’s crucial to detect changes early.

Typically, your doctor will perform a risk assessment to classify your PAH as high, intermediate, or low risk. This process helps them monitor your PAH and response to therapy and also determine how often you need to come in for medical visits. During these visits, your doctor may conduct physical exams and tests such as chest X-rays, echocardiograms, electrocardiograms, blood tests, or pulmonary function tests to assess heart and lung function.

Talk openly with your doctor about how often you should come in for checkups and to assess how your current PAH treatment plan is working. Although medical visits can be time-consuming — “All next week is full of doctors’ appointments,” wrote one myPHteam member — regular checkups are essential for tracking PAH progression, evaluating your treatment plan, discussing any side effects, and giving you peace of mind.

“I went to the doctor today to see about the scarring on my lungs,” said one myPHteam member. “They said it might be from the medication that I am taking or from when I had COVID, but he said it is not bad, so I won’t have to take any new medications. I am happy.”

2. What Symptoms Will This Medication Help?

When prescribed a new medication, it’s important to understand which symptoms it’s designed to address. Even if your pulmonologist or cardiologist has explained the potential benefits, make sure you’re clear on why certain symptoms are being prioritized. This knowledge will help you better monitor your condition and track the effectiveness of your treatment.

“Sometimes, an additional or different prescription makes you feel better. … Try new things if your doctor feels they will help,” a member of myPHteam encouraged.

“I agree,” another member responded. “Each time a new medication was added to my treatment, it helped. I am on three PAH medications. I am feeling great!”

Asking questions can help avoid misunderstandings between you and your doctors. “I am confused about medication for pulmonary hypertension,” one member said. “My cardiologist says I should be on medication, but the lung doctor says that some medications make it worse.”

Understanding why a doctor is making a particular decision about your case of PAH can help you feel more confident in your treatment plan.

3. What Side Effects Might This Medication Cause?

On the topic of medication, you should also ask what side effects you can expect when starting any new drug. This way, if new symptoms start to show up, you can know which ones might come from treatment and which might be related to something else.

For example, prostacyclin analog drugs come with the risk of side effects like nausea, vomiting, headaches, and chest or joint pain. Other drugs, called soluble guanylate cyclase stimulators, can cause similar symptoms, as well as hypotension (low blood pressure) and dizziness. Anticoagulants, which are used to prevent blood clots, increase the risk of abnormal bleeding.

These are just a few examples of PAH drugs and their possible side effects — but all medications typically come with some risk of unwanted effects. It’s helpful to ask your doctor about side effects so that you can know what to expect. While side effects can be uncomfortable, they might be less distressing if you’re prepared for them. Often, side effects can be managed or are short-lived.

4. Does This Treatment Interact With My Other Medications?

Another important question to ask your health care provider relates to drug interactions. If your doctor is prescribing you a new drug, ask if it will interact with your current medications. This is particularly important if you’re being treated for comorbid (co-occurring) conditions. One member shared that they have PH as well as chronic obstructive pulmonary disease (COPD). “I take a few medications for my COPD,” they said.

If you have another health condition, like high blood pressure or lung disease, check with your pulmonologist about how your medications may affect your PAH treatment.

If you have a comorbid condition, like hypertension (high blood pressure) or lung disease, check with your pulmonologist about how your medications may affect your PAH treatment. Some drug combinations are fine, while others can be dangerous.

Your pulmonologist should always consider your current medications when creating your PAH treatment plan, but you should absolutely ask them to explain their decision-making and reasoning.

5. Why Is This the Best Treatment for Me?

As is true with any chronic health condition, everyone’s experience with PAH will vary based on their diagnosis and symptoms. Although talking to friends, family members, and other people with PAH is a valuable practice, the only person who can give you specific medical advice is your own doctor. Depending on a variety of factors, including medical history, family history, and personal risk factors, a health care professional will make different decisions for different people.

Don’t be afraid to ask your pulmonologist questions like “Why is this the treatment you are choosing for me? Why did we rule out other options?” Having the answers can help you feel more at ease about your treatment and stick to your treatment plan.

One myPHteam member who has not been on medication reached out to other members: “I haven’t been put on any medications for my PH. I’m in the bad stage. …I get short of breath even from talking. Should I ask my doctors about medication?”

A different member wrote about their experience, saying,“My new PAH doctor prescribed new medication for my nebulizer and a new inhaler. Going to give it time to see how the medication works.”

More serious interventions, such as a heart or lung transplant, may call for more in-depth conversations with your doctor about your medical decisions. Your health care team should make you feel informed and supported as you navigate your condition, treatment options, and planning for the future.

6. What Is a Good Amount of Exercise for Me?

Living with PAH may require you to make changes in different areas of your life, like physical activity. Before you start or change your PAH treatment, it’s important to ask about lifestyle changes, side effects, and risk factors so you can make the best decisions for your health and safety.

Ask your doctor how much and what type of physical activity would be right for you. You can also ask for suggestions regarding resources, group classes, or exercises you can try that will complement your PAH treatment plan. Be sure you know what treatment side effects to look out for, too, and when to call your care team for help.

For people experiencing PAH symptoms like shortness of breath, chest pain, and restricted blood flow, exercise and other physical activity can be difficult. It may require extra care and planning to ensure you don’t overexert yourself. You also might need help learning how to transition from more strenuous activities to gentler forms of exercise.

Be sure you know what treatment side effects to look out for and when to call your care team for help.

“Fifteen minutes was the max at the gym,” wrote one myPHteam member. Another member said, “I don’t purposely exercise, but I do get lots of walking in on most days. Yesterday it was over 5,000 steps, and I didn’t even realize it was that much until I took my watch off last night.”

Although your exercise routine may look different after a PAH diagnosis, ask your doctor for their advice so you can stay safe and do what’s best for your health during treatment. They can answer your questions directly and also refer you to other specialists, like physical therapists, who can help.

7. Is Pulmonary Rehabilitation Right for Me?

If you’ve connected with others who have PAH or other lung conditions, you may have heard about pulmonary rehabilitation. The goal of this therapy is to improve quality of life for people with pulmonary conditions. It involves breathing techniques, gentle exercise, and education about lifestyle factors like nutrition for your specific condition.

Ask your doctor if they think pulmonary rehabilitation may be a good fit for you and whether they can give you a referral. If you’re having trouble with daily activities with PAH, tell your doctor. They can help determine if a therapy like pulmonary rehabilitation would help.

“Another good day at rehab,” reported a member of myPHteam. “Since going to rehab I can walk farther, but still need the portable oxygen.”

The factors used to decide if pulmonary rehab is a good treatment option for someone with PAH vary from person to person. If you think it might be right for you or would like to learn more about it, ask your doctor.

8. Can I Travel Safely?

When you have PAH, you may encounter new health and safety risks. Air travel can pose a risk to people with PAH because of changes in air pressure and oxygen levels associated with high altitudes. You’ll want to make sure that you’re not putting yourself at an increased risk of complications like heart failure.

Some people with PAH are on oxygen therapy as part of their treatment plan. Oxygen therapy can increase oxygen levels in the blood and reduce blood pressure by widening the blood vessels. If you’re not already being treated for hypoxia (low oxygen levels), your health care provider may recommend oxygen therapy if you are planning to travel by air.

Medical advice may differ depending on your condition stage and risk level. Talk to your doctor before traveling so you can ensure that you’re making safe decisions. If your doctor approves your travel, they also can advise you on health precautions to follow while on your trip.

The most important thing to remember is that everyone with PAH (or any medical condition) has a different experience, and your health care team is best qualified to answer questions about your specific case.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 55,000 members come together to ask questions, give advice, and share their stories with others who understand life with PH and PAH.

Do you have any tips for talking to your doctor about PAH? What questions have you found particularly helpful to ask your doctor? Reply in the comments below, or start a conversation by posting on your Activities page.