Frequently asked questions about Ventavis® (iloprost) |
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Getting Started
Q: How long will I be on Ventavis?
A: PAH* is a chronic disease, and the medicines that treat PAH* are meant to be taken every day for the long term. Talk with your doctors about how Ventavis fits into their treatment plan for you. Until there’s a cure, taking the treatment prescribed by your doctor is an important way to help you manage your disease. Every person responds differently to therapy, so it’s important to let your doctor know how you feel when you visit him/her. Keep in mind that with a chronic disease like PAH*, not getting worse is considered an important treatment goal.
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Q: When will I start feeling better?
A: It’s important to remember that each person responds differently to therapy and some patients may not respond to specific therapies. You shouldn’t expect to feel better overnight. It can sometimes take months to respond to treatment, so it’s important to try to keep a positive attitude. Try setting a goal to help you track your progress on Ventavis. You and your doctor should work together to set a reasonable goal. Some people may want to walk around the block. Others may want to attend their child’s soccer match. Choose something that’s meaningful and realistic for you, and then keep track of how you are doing. Having a goal can be an important part of your treatment plan.
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Q: What happens after my doctor writes a prescription for Ventavis?
A: Once you and your doctor decide that Ventavis is the right treatment for you, your healthcare team sends the Ventavis prescription to PAH Pathways, Actelion’s service and support program. Counselors from PAH Pathways will work with your insurance company to select a specialty pharmacy for you. Ventavis is not available at your neighborhood pharmacy, so a specialty pharmacy works with you to train you on the I-neb AADthe device used to take Ventavisand send you shipments of Ventavis. A PAH Pathways nurse will also call you to see if you have any questions about Ventavis or the I-neb AAD.
If you ever have questions, PAH Pathways gives you a single point of contact for access to Ventavis, reimbursement support, information about financial assistance programs, and information about taking Ventavis. Call 1-866- ACTELION (1-866-228-3546) or visit PAH Pathways to learn more.
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Q: What if I can’t afford my therapy?
A: Paying for therapy is a concern for many people. Ventavis is paid for by many different health insurance plans. PAH Pathways and your specialty pharmacy will work with your insurance company to get Ventavis for you. If you don’t have health insurance, Actelionthe maker of Ventavismay be able to help. PAH Pathways, Actelion’s service and support program, has financial assistance available to help eligible people pay for their therapy. Visit PAH Pathways or call 1-866-ACTELION (1-866-228-3546) to learn more.
You may want to contact the CVC, an independent, nonprofit third-party organization, for information about how to receive financial assistance. If you qualify, the CVC may be able to offer you assistance with insurance policy premiums, emergency financial needs, and peer support programs. Contact the CVC toll-free at 1-888-267-1440 or visit www.caringvoice.org
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Q: How much time do the treatments take each day?
A: The I-neb AAD is the small portable device used to take Ventavis. The I-neb AAD is designed to work with you and adjust to how you breathe to make sure you get the right dose. Because everyone breathes differently, individual treatment times will vary and should take between 4 to 10 minutes per treatment. Ventavis is approved for use 6 to 9 times daily. Your doctor will let you know how many times to use it each day. If you have longer treatment times, learning about the ABCs of Ventavis (Angle, Breathing, and Cleaning) can help you manage your treatment time to keep them as short as possible while still giving you the right dose.
Your doctor may prescribe Ventavis 20 mcg/mL if you have long treatment times and are maintained at the 5 mcg dose. The higher concentration of medicine lowers the amount of solution you need to take by 50%, which gives you shorter treatment time.2
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Q: How much time will I spend on cleaning?
A: Ventavis has convenient once-a-day cleaning to help reduce the time you spend cleaning each day. You can clean your I-neb AAD parts and the chamber (mesh) lids at the end of the day after completing all of your treatments. This should take about 5 minutes. Once a week you boil the parts and chamber lids for 6 to 10 minutes.
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Q: I have a busy schedule. How can I fit Ventavis into my life?
A: Many find that the I-neb AAD’s portability makes it convenient to fit Ventavis into their busy schedules. Because the I-neb AAD is small and lightweight, you can take your treatments almost anywhere at anytime. Some people take treatments while parked in a car, at the office, at a mall, and other places when they are away from home. Take Ventavis as directed by your doctor, but no more often than once every two hours.
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Q: I live in a small apartment. Will I have enough room for the equipment?
A: Chances are that you will have plenty of space because Ventavis doesn’t require a large amount of equipment. The I-neb AAD, charging dock, distilled water, and bowls for cleaning are the main items you need. You should be able to store your medication and equipment in a kitchen cabinet or a small tote bagyour medication needs to be stored in a clean dry place away from extreme temperatures.
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Q: Where can I find distilled water?
A: Most supermarkets and drugstores carry distilled water. Look in the bottled-water aisle.
It’s important to use only distilled water for your daily cleaning and once-weekly boil. Normal tap water has minerals in it that can clog the tiny holes in the chamber (mesh) lids. Keeping the meshes clear of minerals is key to maintaining the I-neb AAD delivery system and to helping you get the most out of your Ventavis treatments. Be sure you purchase distilled water and not spring water. Spring water can still have minerals in it, while distilled water has had all the minerals removed.
Many supermarkets also offer delivery services, so you don’t have to worry about getting the distilled water to your house. Check with your local supermarket to see if this service is available.
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Taking Treatments
Q: How am I supposed to breathe in this treatment if I have trouble breathing on my own?
A: The I-neb AAD is designed to work with you and adjust to how you breathe. Because Ventavis is an inhaled PAH* therapy, it goes to the lungsthe site of disease for people with PAH*. When taking your treatments, try your best to breathe normally in a slow and steady manner. Try counting one-one thousand, two-one thousand, three-one thousand each time you breathe in. Talk with your doctor if you have problems breathing properly while taking treatments. Your healthcare team can show you tools that will let you know the best way for you to breathe when taking Ventavis.
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Q: I’m not a technical person. Will I be able to handle using the I-neb AAD?
A: You don’t have to be a technical person to take Ventavis with the I-neb AAD. Thousands of people have made the I-neb AAD part of their lives, and it’s easy to see why. It’s designed to be easy to use, it adapts to the way you breathe, and it’s fully portable, so you can take it with you when you leave the house. Before starting Ventavis everyone receives training from nurses or respiratory therapists on how to use the I-neb AAD. Keep a positive attitude and you can get the hang of it. If you have any questions about the I-neb AAD, you can call PAH Pathways at 1-866-ACTELION (1-866-228-3546), or contact your specialty pharmacy.
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Q: What do I do if I have to take a treatment when I’m away from the house?
A: You don’t have to be at home to take your treatments. When fully charged, the I-neb AAD battery will last for up to 40 treatments, so you don’t need to stay at home. Because the I-neb AAD is small and portable, many people take treatments in places such as parks, in an airplane when traveling, or even at the mall. Be sure to plan ahead and bring everything with you when you leave the house so you won’t miss a treatment.
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Q: Can I take my treatments at work?
A: Yes, you can take your treatments at work. You can take treatments wherever you feel comfortable, as long as you can stay still and keep the I-neb AAD at a 90-degree angle. You may find it useful to speak with your supervisor and/or coworkers beforehand to explain your treatments.
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Q: Can I be flexible and take Ventavis whenever I want?
A: You can be flexible and decide when and where you take your treatments each day, but you should always take Ventavis exactly as prescribed by your doctor. For example, if your doctor prescribed Ventavis 6 times a day, take it once when you wake up, once before going to bed, and at 4 other times throughout the day. You do not need to take Ventavis the same time every day, so you have flexibility to fit Ventavis into your schedule as it changes. Make sure that your treatment sessions are spaced at least 2 hours apart.
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Q: What happens if I miss a treatment?
A: If you happen to miss a dose, you don’t need to be worried. Simply take a treatment as soon as you’re able to, or continue with your regular dosing schedule and take your next planned treatment. Make sure that you don’t take Ventavis more than once every 2 hours. If you end up taking less than the number of treatments your doctor has asked that you take, go back to the prescribed amount the next day.
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Q: Do you have an example of how I would take Ventavis 6 times a day?
A: Develop a schedule that works best for you. Many patients who take Ventavis 6 times a day take a treatment first thing when they get up in the morning and before they go to bed, fitting in the 4 other times during the day (one before and after lunch and one before and after dinner). Here’s an example that might help. Always ask your doctor what is the right dosing for you.
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Taking Ventavis Each Day: An Example
- Dose
- When
- 1
- First thing in the morning
- 2
- Mid-morning
- 3
- After lunch
- 4
- Before dinner
- 5
- After dinner
- 6
- At least 2 hours following your after-dinner session
Always ask your doctor what is the right dosing for you.
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Q: What if I get too tired to finish my treatment?
A: Remember you can rest during your treatments. When you take your next treatment try taking a rest after the first 3 minutes for about 30 seconds. Then start breathing on the I-neb AAD System again. You can repeat this until you complete the treatment. Also, when you breathe out, don't push the air out, just relax and let your out-breath happen naturally.
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Q: What should I do if my treatment times get too long?
A: If you experience treatment times longer than 4 to 10 minutes, you should notify your doctor to discuss options to shorten your treatment times. Learning about the ABCs of Ventavis (Angle, Breathing, and Cleaning) can help you manage your treatment times to keep them as short as possible. Because Ventavis is only delivered when you breathe in, you can shorten your treatment times by taking longer breaths. Try counting one-one thousand, two-one thousand, three-one thousand each time you breathe in. Your doctor also has access to tools that can show you how to take longer breaths.
The I-neb AAD can deliver Ventavis fastest when it’s held level. Hold the I-neb AAD at a 90-degree angle to your mouth, like you would when eating a hamburger. You can also rest your elbows on the table while holding your I-neb AAD to make it easier.
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Q: Do I need to take Ventavis at night?
A: No. Most patients do not usually take Ventavis at night. During the original clinical studies for Ventavis, around 90% of patients slept through the night without taking Ventavis. This means you can receive the benefits of Ventavis without waking up at night to take any doses. Some patients may choose to take a dose when they wake up at night. You should talk to your doctor to discuss your specific treatment schedule and what works best for you.
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Q: Can I take Ventavis while wearing my oxygen?
A: Yes, you can take Ventavis and continue to wear your oxygen in your nose. Remember if you use a pulse oxygen system; turn it to continuous flow when taking your Ventavis treatment.† The I-neb AAD System will deliver Ventavis when you breathe in through your mouth. You will still get your oxygen because your nose acts as a reservoir (you don't have to breathe in through your nose in order to get your oxygen). When you breathe in through your I-neb AAD System, you will receive both your Ventavis and your oxygen. You can turn back to pulsed oxygen delivery after you have finished your Ventavis treatment. Speak with your doctor about the proper oxygen setting you should use while taking your Ventavis treatment.
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The Path Ahead
Q: Where can I go if I have other questions?
A: A PAH Pathways Counselor will be glad to help you with questions about your Ventavis therapywhether it’s now when you’re first starting up, or if you have questions later on during therapy. PAH Pathways, Actelion’s service and support program, gives you a single point of contact for access to Ventavis, reimbursement support, information about financial assistance programs, and information about taking Ventavis. To learn more, please call 1-866-ACTELION (1-866-228-3546) or visit PAH Pathways.
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*What is Ventavis?
Ventavis is a prescription medicine used to treat adults with certain kinds of severe pulmonary
arterial hypertension (PAH), a condition in which blood pressure is too high in the blood vessels
between the heart and the lungs. Ventavis may improve your ability to exercise and your
symptoms for a short time by lowering your blood pressure and opening up the blood vessels
in your lungs.
- In the key clinical study, Ventavis showed clinical improvement as defined by 3 specific measurements:
ability to exercise as measured by the 6-minute walk test, symptoms (NYHA Functional Class), and
decrease in the worsening of PAH symptoms.
- Ventavis is a medication you breathe in through a special device called the I-neb Adaptive Aerosol
Delivery (AAD) System.
The study showing Ventavis is effective included mainly patients with NYHA Functional Class
III-IV PAH. In these patients, PAH was caused by unidentified or hereditary factors (65%) or
connective tissue diseases (23%).
Ventavis has not been studied in children younger than 18 years old.
What is the most important information I should know about Ventavis?
Ventavis may not be right for you. Before taking Ventavis, tell your doctor about all of your medical
conditions, including if you have liver or kidney problems; are pregnant, or plan to become pregnant; or are breast-feeding. Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. Especially tell your doctor if you take medicines used to treat high blood pressure or heart problems or medicines that lessen blood clotting (warfarin, Coumadin, Jantoven). Ventavis and other medicines may affect each other, causing
side effects.
What are the possible side effects of Ventavis?
- Ventavis may cause side effects, including feeling dizzy, lightheaded, and faint. If you have any of
these side effects, you should stand up slowly when you get out of chairs or bed. Tell your doctor if your
fainting gets worse during treatment with Ventavis. Your doctor may need to change your dose
or treatment.
- Do not drive a car or operate any tools or machines if dizziness or fainting from low blood
pressure is a problem for you.
- You may have trouble breathing after taking Ventavis, because it may cause the muscles around
your airway to tighten (bronchospasm). Get emergency help right away if you have trouble
breathing.
- The most common side effects of Ventavis include red face (flushing), increased cough, low blood
pressure, headaches, nausea, spasm of your jaw muscles that makes it hard to open your mouth,
and fainting.
Talk to your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of Ventavis. For more information, ask your doctor or pharmacist.
Call your doctor for medical advice about side effects. You may report side effects to the FDA at
1-800-FDA-1088.
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