Caring for Your Loved One
Emotional support is important when caring for a person living with a chronic illness. But, there are many other things you can do to help someone living with PAH.
Be Informed – Learn as much as you can about PAH and your loved one's treatment so you are able to support them when they need you.
Listen – Remember, you cannot fix your loved one's disease, but you can listen and be there for them. They may be going through a lot of emotions and may be feeling alone with this disease, so knowing someone is there for them is invaluable.
Attend Doctor's Appointments Regularly – It's great for a patient to have another set of ears at office visits. It's often very difficult for a patient who is under stress with a new diagnosis to absorb all of the information that is coming at them. It will also help you understand their treatment and be able to remind your loved one of something the doctor said that they might have missed.
Ask Questions – Get to know doctors and their staff, specialty pharmacy nurses and everyone involved in your loved one's care. You should have a number of resources that you are able to call when you have questions or concerns. You can also call the Remodulin hotline at 1-866-458-6479.
Observe – Your loved one may not always notice whether their symptoms are getting better or worse, so it's helpful for you to keep an eye on how they are doing. Are their symptoms getting worse? Are they experiencing side effects? You may notice outward signs that things are better or worse that the patient may not notice. Check for signs of decline, including having less energy, increased breathlessness and swelling in the ankles and legs. This may mean the patient needs an adjustment in medication or dosage. You may also want to keep a journal of your observations and point them out to the patient or their doctor.
Most of All: Take Care of Yourself
Click here for some simple suggestions on taking care of yourself.
Indication
Remodulin is a prostacyclin vasodilator indicated for the treatment of pulmonary arterial hypertension (PAH) (WHO Group 1) to diminish symptoms
associated with exercise. Studies establishing effectiveness included patients with NYHA Functional Class II-IV symptoms and etiologies of idiopathic
or heritable PAH (58%), PAH associated with congenital systemic-to-pulmonary shunts (23%), or PAH associated with connective tissue diseases (19%).
It may be administered as a continuous subcutaneous infusion or continuous intravenous infusion; however, because of the risks associated with chronic
indwelling central venous catheters, including serious blood stream infections, continuous intravenous infusion should be reserved for patients who
are intolerant of the subcutaneous route, or in whom these risks are considered warranted.
In patients with PAH requiring transition from Flolan® (epoprostenol sodium), Remodulin is indicated to diminish the rate of clinical
deterioration. The risks and benefits of each drug should be carefully considered prior to transition.
Important Safety Information for Remodulin
- Chronic intravenous infusions of Remodulin are delivered using an indwelling central venous catheter. This route is associated with the risk
of blood stream infections (BSI) and sepsis, which may be fatal. Therefore, continuous subcutaneous infusion is the preferred mode of administration.
- Remodulin should be used only by clinicians experienced in the diagnosis and treatment of PAH. Remodulin is a potent pulmonary and systemic
vasodilator. It lowers blood pressure, which may be further lowered by other drugs that also reduce blood pressure. Remodulin inhibits platelet
aggregation and therefore, may increase the risk of bleeding, particularly in patients on anticoagulants. Remodulin dosage adjustment may be
necessary if inhibitors or inducers of CYP2C8 are added or withdrawn.
- Initiation of Remodulin must be performed in a setting with adequate personnel and equipment for physiological monitoring and emergency care.
Therapy with Remodulin may be used for prolonged periods, and the patient’s ability to administer Remodulin and care for an infusion system should
be carefully considered.
- Remodulin dosage should be increased for lack of improvement in, or worsening of, symptoms and it should be decreased for excessive pharmacologic
effects or for unacceptable infusion site symptoms.
- Abrupt withdrawal or sudden large reductions in dosage of Remodulin may result in worsening of PAH symptoms and should be avoided. Caution
should be used in patients with hepatic or renal insufficiency.
- The most common side effects of Remodulin included those related to the method of infusion. For subcutaneous infusion, infusion site pain and
infusion site reaction (redness and swelling) occurred in the majority of patients. These symptoms were often severe and could lead to treatment
with narcotics or discontinuation of Remodulin. For intravenous infusion, line infections, sepsis, arm swelling, tingling sensations, bruising,
and pain were most common. General side effects (>5% more than placebo) were diarrhea, jaw pain, vasodilatation, and edema.
For more information about REMODULIN, please see the Full Prescribing Information.
Questions? Call the Customer Service Line at 1-877-UNITHER (1-877-864-8437).