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Life with Remodulin

When you start on Remodulin, you may feel overwhelmed. But living with a pump can be easier once you learn a routine that works for you. There are simple things you can do to help incorporate Remodulin into your daily life. The information below can help answer some of the most common questions you may have on what to expect with pump therapy.

Remember, your PAH healthcare team, including your Specialty Pharmacy nurse, is always the best source of information about Remodulin and your pump.

Welcome To The Remodulin Facebook Community

The Remodulin Facebook page offers posts, videos, recipes, and additional information about Remodulin—helping you to learn more about what life could look like with pump therapy.

Check out our page today

Use these tips to help make your life with Remodulin a little easier.

Showering
- Stick a small shower caddy or basket to the wall to hold your pump and keep it away from water. When traveling, you can use a plastic bag instead of your caddy
  - Your Specialty Pharmacy can also suggest ways to make it easier to shower with a pump
- Even if your pump is water resistant, you may still want to protect it from unnecessary water exposure
- Your infusion site needs to be protected from water to minimize the risk of infection
  - To help keep your infusion site dry, try using plastic cling wrap around your body
PAH Life Hacks: Showering With Your Pump

PAH patient Carey shares her tips on how to protect a pump in the shower.
Sleeping
- If you wear pajamas, you can clip your pump to your nightshirt or pajama bottoms
- Place your pump on a small chair or table next to your bed while you sleep. This can make it less likely that you accidentally hit a button or disconnect any tubing. A body pillow may work for you as well
Carrying your SC pump
- Explore different ways to wear your pump
  - Tucked into a bra
  - Clipped to your clothing
  - In a passport holder worn under clothes
  - In pockets or a fanny pack
  - By sewing a “pump pocket” under the arm of a sports bra
  - In biking shorts under a dress
  - In a belly band
  - In certain smartphone holders designed for exercise
Carrying your IV pump
- A shoulder bag or fanny pack could be useful
Other accessories for carrying your pump may be available. Ask your doctor or Specialty Pharmacy nurse for recommendations.

Talk to your Specialty Pharmacy nurse about ways to incorporate your pump into your life.

Learn More

It can be difficult to communicate to your family and friends why you can or cannot do certain things, especially when living with a pump. They may not understand what you need or know how they can support you. Let them know that you don’t expect them to have all the answers and that sometimes just listening and being there is enough.

It can also be challenging to talk to coworkers or other acquaintances who may not know you as well. Of course, there is no right or wrong way to talk to people. Just share as much as you are comfortable sharing. It can help to have a short “talk track” in your head that can give enough information without feeling too personal.

The diagnosis affects your family members too, so you need to reach out to them as well so they understand what you may be feeling and you can understand what they’re feeling.

—Errin, a Remodulin patient

Talk to your doctor about connecting with other patients living with PAH.

Many people with PAH are also living with other health conditions. Make sure any healthcare providers you see are aware of your PAH so they can manage these health conditions appropriately.

Always consult your PAH healthcare team before undergoing any medical procedure.

Don’t disconnect your pump. Other healthcare providers outside your PAH team should be made aware of the importance of continuous administration of Remodulin.
Always coordinate your care with your PAH team, including hospital visits, MRIs, and other medical needs you may have.
Create a medical wallet card and carry it with you at all times. This will help explain to your doctors and nurses about PAH and about your Remodulin treatment. It can be helpful to include emergency contact information, such as your Specialty Pharmacy, your PAH doctor, or care partner.
Wear a medical alert bracelet or necklace to alert healthcare providers in case of emergency situations.

With a little planning, traveling with a pump doesn’t have to be stressful. These tips can help your travel plans go smoothly.

Store Remodulin appropriately. If you are using SC or IV Remodulin, you may have different requirements for how best to store your medication while you travel to your destination. Ask your doctor about the best way to store your medication. Always keep your medication with you in your hand luggage and never in your checked luggage.
Give yourself extra time for airport security. After you inform the Transportation Security Administration (TSA) staff about your pump, you should request that they screen you manually, because the traditional screening equipment may set off your pump’s alarm. Check the status of your pump after going through security.
Ask your doctor for a prescription and a letter of medical necessity. He or she can outline your need to keep Remodulin with you at all times so you will be able to carry your pump and supplies on your flight.

Before you travel, contact your Specialty Pharmacy to make sure you have enough Remodulin and pump supplies.

I’ve been through the airport with Remodulin. Usually when I get to the first security point, I tell them that I’m on a medication pump. I carry a letter from my doctor stating that it’s a medication that can’t be shut off, and they send me on my way.

Bev—a Remodulin patient

PAH Life Hacks: Traveling With Your Pump

PAH patient Wendy shares some advice for traveling with a pump.

Be sure to coordinate with your PAH healthcare team if an MRI is needed.

For SC and IV pumps
The FDA recommends removing infusion pumps for any kind of radiographic studies, including MRI procedures. Temporarily disconnecting your device for these exams may be necessary to prevent radiation exposure. Always talk to your PAH doctor before disconnecting your pump.
For implanted pumps
The FDA does not recommend receiving an MRI exam with an implanted pump, as serious adverse events may occur.

If you receive an MRI exam with your implanted pump, your doctors, nurses, and MRI technologists must follow specific procedures before, during, and after the exam.

For the procedures, bring along an implant card to identify the make and model of your pump.

Living with PAH can be frustrating, overwhelming, and even scary. But remember that help is available and taking time to care for your emotional well-being is important for both you and your family.

If you feel like you need help, reach out to your nurse or doctor and together you can find the resources and support you need. There may be resources available to you, such as counseling or other programs, that are covered by your insurance carrier.

Support groups in your community or online can help by connecting you to people who may share your experiences and have helpful advice to offer. Although these groups should not substitute for medical care from your healthcare team, they can be great sources of support from people who understand what you may be going through.

Remodulin Support Program

Learn More

Pulmonary Hypertension Association (PHA)—connects you to support groups in your area

Learn More

National Organization for Rare Disorders (NORD^®)

Learn More

Seek out other patients. I highly recommend joining a local support group to meet others with PAH. They can share tips and knowledge or just be a shoulder to lean on.

—A Remodulin patient

Living with a pump doesn’t mean that intimacy is not possible. Many other people with pumps have successfully adapted their lives to include things that are important to them.
- Be open and honest about your feelings with your partner
- Be mindful of your pump’s location. If you are feeling self-conscious, you can try covering your pump with clothing
- If you are comfortable, talk with members of your healthcare team about ways to stay connected with your loved one

What I’ve learned since my diagnosis is I’ve had to be a lot more gentle with myself and just take small steps.

Errin—a Remodulin patient

IV=intravenous; MRI=magnetic resonance imaging; SC=subcutaneous.

Stories from Remodulin patients

Hear from Errin and Donna about their experiences with treatment
Learn tips from other patients on managing a pump

Just keep going. Just keep trying. It may end up being even better than you thought it could be.

—Donna, IV Remodulin patient

FIND MORE REMODULIN SUPPORT

Remodulin^® (treprostinil) Injection

Important Safety Information for Remodulin

Before you take Remodulin, tell your healthcare provider if you:

Have other medical conditions or take other medicines that may affect your use of Remodulin by increasing the risk of side effects or decreasing the drug’s effectiveness.
Have liver or kidney problems. Your Remodulin dose may need to be adjusted if you have liver problems.
Have low blood pressure or bleeding problems.
Are taking gemfibrozil (for high cholesterol), rifampin (for infection) or other drugs that affect liver enzymes. Your doctor may need to adjust your Remodulin dosage.
Are pregnant, breastfeeding, or planning to become pregnant. It is not known if Remodulin will harm your unborn baby or if Remodulin passes into your breast milk.

What are the serious side effects of Remodulin?

Continuous intravenous (IV) infusions of Remodulin delivered using an external infusion pump, with a tube placed in a central vein within the chest, are associated with the risk of blood stream infections and sepsis, which may be fatal. Therefore, continuous subcutaneous (SC) infusion delivered just beneath the skin is the preferred type of delivery.
Worsening of PAH symptoms. Do not stop taking or greatly reduce your Remodulin dose without consulting your doctor.
Low blood pressure (symptomatic hypotension). If you have low blood pressure or are taking drugs that lower your blood pressure, the risk of low blood pressure is increased.
Bleeding problems. Remodulin may increase the risk of bleeding in people who take blood thinners (anticoagulants).

What are the possible side effects of Remodulin?

In clinical studies of SC infusion of Remodulin, most people experienced infusion site pain and infusion site reaction (redness, swelling, and rash). These symptoms were sometimes severe and sometimes required treatment with narcotics or discontinuation of Remodulin.
IV infusion of Remodulin delivered through an external pump has been associated with the risk of blood stream infections, arm swelling, tingling sensations, bruising, and pain.
The most common side effects seen with either SC or IV Remodulin were headache, diarrhea, nausea, rash, jaw pain, widening of the blood vessels (vasodilatation), and swelling from fluid retention (edema). These are not all the possible side effects of Remodulin. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at www.fda.gov/MedWatch or call 1-800-FDA-1088.

The risk information provided here is not comprehensive.

What is Remodulin?

Remodulin is a prescription medication used to treat adults with pulmonary arterial hypertension (PAH; WHO Group 1), which is high blood pressure in the arteries of your lungs. Remodulin can reduce symptoms associated with exercise. Remodulin was studied mainly in patients with NYHA Functional Class II-IV symptoms. It is not known if Remodulin is safe and effective in children.

In people with PAH who need to switch from epoprostenol, Remodulin is approved to slow the worsening of symptoms.

REMISIconOct19

To learn more about Remodulin, talk with your healthcare provider. Please see Full Prescribing Information at www.remodulin.com or call Customer Service at 1-877-UNITHER (1-877-864-8437).

PAH=pulmonary arterial hypertension; WHO=World Health Organization.

Remodulin^® (treprostinil) Injection

Important Safety Information for Remodulin

Before you take Remodulin, tell your healthcare provider if you:

Have other medical conditions or take other medicines that may affect your use of Remodulin by increasing the risk of side effects or decreasing the drug’s effectiveness.
Have liver or kidney problems. Your Remodulin dose may need to be adjusted if you have liver problems.
Have low blood pressure or bleeding problems.
Are taking gemfibrozil (for high cholesterol), rifampin (for infection) or other drugs that affect liver enzymes. Your doctor may need to adjust your Remodulin dosage.
Are pregnant, breastfeeding, or planning to become pregnant. It is not known if Remodulin will harm your unborn baby or if Remodulin passes into your breast milk.

What are the serious side effects of Remodulin?

Continuous intravenous (IV) infusions of Remodulin delivered using an external infusion pump, with a tube placed in a central vein within the chest, are associated with the risk of blood stream infections and sepsis, which may be fatal. Therefore, continuous subcutaneous (SC) infusion delivered just beneath the skin is the preferred type of delivery.
Worsening of PAH symptoms. Do not stop taking or greatly reduce your Remodulin dose without consulting your doctor.
Low blood pressure (symptomatic hypotension). If you have low blood pressure or are taking drugs that lower your blood pressure, the risk of low blood pressure is increased.
Bleeding problems. Remodulin may increase the risk of bleeding in people who take blood thinners (anticoagulants).

What are the possible side effects of Remodulin?

In clinical studies of SC infusion of Remodulin, most people experienced infusion site pain and infusion site reaction (redness, swelling, and rash). These symptoms were sometimes severe and sometimes required treatment with narcotics or discontinuation of Remodulin.
IV infusion of Remodulin delivered through an external pump has been associated with the risk of blood stream infections, arm swelling, tingling sensations, bruising, and pain.
The most common side effects seen with either SC or IV Remodulin were headache, diarrhea, nausea, rash, jaw pain, widening of the blood vessels (vasodilatation), and swelling from fluid retention (edema). These are not all the possible side effects of Remodulin. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at www.fda.gov/MedWatch or call 1-800-FDA-1088.

The risk information provided here is not comprehensive.

What is Remodulin?

In people with PAH who need to switch from epoprostenol, Remodulin is approved to slow the worsening of symptoms.

REMISIconOct19

To learn more about Remodulin, talk with your healthcare provider. Please see Full Prescribing Information at www.remodulin.com or call Customer Service at 1-877-UNITHER (1-877-864-8437).

PAH=pulmonary arterial hypertension; WHO=World Health Organization.

Life with Remodulin

Welcome To The Remodulin Facebook Community

Tips for living with a pump

How do I talk to people about my PAH?

Does my pump affect how I manage my other health conditions?

How can I travel with my pump?

Can I have an MRI with a pump?

Where can I find emotional support?

How do I maintain intimacy with my partner?

Stories from Remodulin patients