After a PH diagnosis, you will be prescribed one or more medications to stop your disease from getting worse and hopefully help you feel better. Some people with PH experience treatment side effects, so you may end up with additional medication to help manage side effects. It can feel like a lot to manage. Working with your care team and support network to build a medication routine you can stick to is an essential step for avoiding medication mishaps and improving your quality of life with PH.

Take charge of your health

Knowledge is power. Educate yourself about all your medications, their side effects and interactions. Doing so can prevent many medication mishaps. Find out about the different types of PH therapy and how they work.

It’s a good idea for people living with PH to keep information about medications, current doses, allergies, medical/surgical history, physicians and insurance with them at all times.

Taking PH medication every day at the correct time(s) and with the correct food will benefit you most. Take advantage of apps, timers and other tools to keep yourself on track.

A medical bracelet informs an emergency responder to search deeper for the other information they need to treat you adequately. These simple tools can help save your life.

Many patients learn from experience what routines help them get the most from their medications. While medical advice should always be reviewed and confirmed by a qualified clinician, talking with other patients about their tips and tricks can be life altering. Connect with others.

Ask questions, speak up when something feels off, and keep pushing to get the information you need. No one knows your body better than you.

Over the counter side effects and interactions

Here are a few important interactions you should know about:

Any ingredient contraindicated for people with high blood pressure, as a general rule, also is contraindicated for people with PH. If you’re uncertain about the contents of a specific medication, ask your PH pharmacist.

Avoid medications with decongestants

Stimulants like pseudoephedrine or ephedrine, can cause blood vessels to constrict, which can worsen PH and increase blood pressure and heart rate. These are often found in cold, flu, sinus, allergy and headache medications.

Those medications also can cause palpitations and irregular heart rhythms.

Antihistamines

Medications that contain antihistamines (diphenhydramine, Benadryl, Claritin, Zyrtec, Allegra) can be used to treat cold symptoms, allergies and hay fever, as long as they don’t contain decongestants (Claritin D, Zyrtec D or Allegra D).

Avoid non-steroidal anti-inflammatory medications (NSAIDs)

  • Ibuprofen (Advil, Motrin) and naproxen (Aleve) can cause swelling and fluid retention, harm your kidneys and increase blood pressure and bleeding from your stomach, particularly when taken in combination with blood thinners such as warfarin, Eliquis, Xarelto, Pradaxa.
  • Acetaminophen (Tylenol) generally is safe, but people with liver disease should use this drug cautiously.

Avoid supplement risks

Herbal therapies should be viewed as drugs, not simply “natural supplements.”

PH therapies and side effects

  • Targeted Therapies for Pulmonary Hypertension

    Targeted medications for pulmonary hypertension are the result of years of research and development, including clinical trials with patients. These treatments work by addressing chemical imbalances in the lungs.

  • Transplant and Procedures

    Surgeries and interventional procedures for pulmonary hypertension include pulmonary thromboendarterectomy, balloon pulmonary angioplasty, atrial septostomy, reverse Potts shunt, and lung or heart-lung transplantation. 

  • Supplemental Oxygen Therapy

    Supplemental oxygen helps increase oxygen levels in the blood and reduce symptoms such as fatigue and shortness of breath.

  • Medication Side Effects and Interactions

    Every drug class that treats pulmonary hypertension has several side effects and drug interactions. Each specific treatment page also lists warnings, but here you can easily compare between types of drugs.

  • Managing Nausea and Vomiting

    Nausea and vomiting can be side effects of some pulmonary hypertension drugs. Here’s what you can do. Since these symptoms can also be caused by heart failure common in PH, let your medical team know what you are experiencing.

Work with your medical team

PH is a complicated disease, and open and honest communication between you and your medical team is key. Learning to relay updates, questions and concerns to your doctors and nurses is an essential step towards becoming your own health advocate.

A lot. Talk with your PH physician and nurse about your medication options. Your doctor will do their best to develop a treatment plan that meets your needs and has a high impact on your disease.

Many PH patients have several physicians. Even with the development of electronic medical records, health care professionals and emergency responders may not have access to all of your medical information. Keep clear, up to date medical records. Share changes in your health and medications with all your health care professionals. Remember to share changes to all your medications, including things like allergy medication and supplements, not just changes that directly affect your PH.

There are no stupid questions. Medical professionals are educated and knowledgeable about medications but they often are busy and can become distracted. Don’t be afraid to ask questions several times until you are comfortable that they’ve been answered adequately.

Know when to call your PH care team

As your needs, symptoms or medication side effects change, keep open communication with your medical team.

Your PH care team

Treatment tips and tricks

PH medications are designed to make you feel and fare better. They work best when taken regularly, on time and as ordered but that can feel overwhelming at first. Here are a few tips to help:

1. Set a beeping alarm to go off when it’s time to take your medication. Use your watch or cell phone so you have it with you at all times.

2. If you work during the day or expect to be out of the house for a stretch of time, have a plan for when and where you will take your medication.

3. Keep a medication checklist or diary to record each dose as you take it.

4. Ask a friend or family member to check in with you on a daily basis with friendly reminders. Remember, you’re not in this alone.

5. If you are planning a trip that overlaps your medication refill period, contact your pharmacy in advance and ask what you need to do to make sure you have all of the medication you need while you are traveling.

6. Remember that supplemental oxygen is a drug too. Supplemental oxygen has proven benefits in improving health and symptoms and should be taken as prescribed, even when it feels inconvenient or awkward. If you are encountering barriers to getting or using your oxygen equipment, contact PHA and your PH medical team for support.

7. If you’re still struggling to follow your medication regimen as prescribed, ask your PH doctor or nurse for help. Be honest with your PH team about your medication adherence so they can work with you to find a solution.

Adding and changing medications

You might find these practical tips helpful when adding or changing your PH medications.

  • If you are already taking a PH medication, ask your doctor if the new medication will replace your current therapy or be added to it.
  • Ask how you will know if the new therapy is working. Find out what tests will be used to measure your progress and when they will take place.
  • Learn about common, and less common side effects of the new medication. Report any and all side effects to your PH medical team promptly.
  • Work with your medical team, or visit PHA’s insurance pages to learn what financial assistance options are available for your new medication.
  • If you already take specialty or mail-order medications, remind our medical team what pharmacy you use. They may be able to work with you to have all of your medication provided by the same pharmacy.
  • Explore your delivery options. Prices for some PH therapies can vary by retail pharmacy, or vary between local and mail-order pharmacies.

Don’t accept no from your insurance company

Work with your medical team to appeal denials and navigate barriers such as step therapy and prior authorization. PHA’s online insurance guide offers guidance on how to navigate insurance issues.

Insurance

More medication resources

If you are transitioning to new medication, explore PHA’s resources to help you answer your questions. Find a peer mentor who uses the medication you need information on, look for information on insurance and financing challenges and find out more about tests.