How Remodulin works
For patients new to prostacyclin infusion therapy, Remodulin is started at 1.25 ng/kg/min by continuous infusion. If that is not tolerated because of systemic effects, the rate may be reduced to 0.625 ng/kg/min. The label recommends increases of 1.25 ng/kg/min per week for the first 4 weeks and 2.5 ng/kg/min per week thereafter, depending on clinical response. Remodulin should not be stopped abruptly.
PAH is a progressive condition affecting blood vessels, lungs and heart. Remodulin mimics some effects of natural prostacyclin, helping blood vessels stay open and making it easier for the heart to pump blood through the lungs. It may improve exercise-related symptoms including shortness of breath and fatigue.
Safety and side-effect management
Before taking Remodulin, tell your healthcare provider about other medical conditions and medicines, liver or kidney problems, low blood pressure, bleeding problems, gemfibrozil, rifampin, pregnancy, plans for pregnancy, or breastfeeding.
Your specialty pharmacy nurse and healthcare team can help manage side effects. Communicate side effects with your care team and do not suddenly discontinue Remodulin; sudden stoppage may be dangerous.
- Nausea/vomiting: taking with food, small frequent meals, ginger-based foods, or asking your provider about anti-nausea medication may help.
- Diarrhea: discuss titration and dietary changes with your care team; over-the-counter or prescription antidiarrheal medicines may be recommended.
- Headache: acetaminophen is commonly used; ask your care team if headaches persist.
- Dizziness can be serious; discuss it with your care team and use caution with sudden position changes.
- Jaw pain often improves with time; slow bites or sips, crackers, hard candy or gum before eating may help.
- Flushing is usually not dangerous; cold packs or a cool compress may help.
Infusion-site pain
For subcutaneous use, the live MedEd guidance lists measures patients can discuss with their care team, including ice, warm Epsom-salt baths, aloe vera gel, arnica oil, capsaicin cream, topical anesthetic agents, certain topical corticosteroids, and non-opioid pain medicines.
Starting Remodulin SQ
No surgery is needed to start subcutaneous Remodulin. Working with a Specialty Pharmacy Services provider, treatment may be started at home.
Remodulin is delivered through a very thin, short, flexible catheter inserted just beneath the skin and a microinfusion pump worn on the body.
Wearing the pump
- In a passport holder worn under clothes.
- In pockets or a fanny pack.
- In a pump pocket sewn under the arm of a sports bra.
- In biking shorts under a dress.
Do not pinch extension tubing or allow movement to pull at the catheter or infusion site. Ask your Specialty Pharmacy about the best way to wear the pump.
A specialty pharmacy nurse provides training; ongoing support includes refills, follow-ups, home nurse visits if needed and a 24-hour patient hotline.
Financial support
Remodulin Copayment Assistance Program
United Therapeutics offers copay assistance for eligible commercially insured patients. Enrollment information is available through ASSIST at 1-877-864-8437. Medicare, Medicaid and other government-program patients are not eligible for the commercial copay program.
Other assistance may be available through ASSIST. Medicare and Medicaid patients may also be able to seek copay support through charitable assistance foundations.
Patient support
The Remodulin Support Program offers treatment information and a Remodulin Patient Journal. United by PAH provides PAH information and support resources. The PEER Network connects patients and caregivers with volunteer mentors; call 1-866-505-7337 for more information.
Expectations
PAH is a serious condition. Treatment benefits may develop gradually while side effects can occur early. Talk with your care team about managing them and do not change medication on your own.
Life with PAH and resources
For additional PAH education and support, see the Pulmonary Hypertension Association, NHLBI, and American Heart Association.