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Flolan Resource Page
Flolan® - the first drug developed to treat pulmonary arterial hypertension (PAH) in the late 1990's - is still considered the "gold standard" in PAH care, yet it is often the treatment of last resort for a variety of reasons. Many doctors prefer to begin treatment with the newer, less invasive oral and/or inhaled medications before considering Flolan. For some patients the newer drugs either alone, or taken in combination, have proven effective so this can be a good first step. Also, a patient has to be ready for Flolan. Flolan requires a level of maturity and commitment some patients may not be ready for especially if they have not yet quite grasped the seriousness of a PAH diagnosis. It's often best to give the specialist a chance to get to know their patient and a patient a chance to consider other options and learn about PAH. Of course all of this depends on a patient's profile, test results and functional classification. If a person presents with significant functional impairment, right heart failure and/or very high pulmonary artery pressures, Flolan may be the only option on the table.
Starting on Flolan can be an anxiety provoking prospect for many patients. If they have been in touch with the PAH community for some time, they may have heard stories about this therapy and have decided they could never take that step. While it is true the drug must be handled with some delicacy, administered exactly, mixed precisely and may involve some life-style adaptations, seasoned Flolan patients will tell you it's not such a big deal once you get used to it and in a number of cases, they will also tell a you it gave them a much improved quality of life.
Finally, we cannot tell you if Flolan is right for you, but we can help you understand a little bit of what your day might be like with Flolan, including the schedule you must keep for mixing, changing pumps, tubing and batteries.
A few of our veteran Flolan users have offered some tips for dealing with Flolan day to day. We asked them to show us the supplies involved and explain a little bit about their daily routine. The purpose of this page is NOT to provide step-by-step instructions for a new Flolan patient to follow, but to de-mystify the process for potential future Flolan users.
For clarification purposes you need to know there are three "versions" of injectable epoprostenol on the market: the original from United Therapeutics marketed under the name Flolan®, a generic version from Teva often referred to as generic Flolan, and a more stable version from Hollister-Stier Laboratories marketed under the name Veletri®. The following information is targeted for the original Flolan® although some of the information may be applicable to the others as well.
Notice: The following information is not intended nor should it be used as instructional material. Please follow your doctor's directions and recommendations if you are a Flolan user.
The Daily Routine - An overview and a few tips from experienced patients.
Hand washing is critical. Your supplies include a bottle of clorohexadine which has several uses during the mixing and cleaning process. Use it to wash your hands like a surgeon would wash before an operation. Scrub each finger up to 20 seconds each. Don't cut corners or rush. You do not want to risk infection so take this step seriously and do not hurry through it. If you develop a skin rash on your hands from this daily routine, you might use a surgeons sterile gloves (typically Latex) while you are mixing.
Clean your work surface with the alcohol wipes. The picture below shows one patient's supplies on a plastic tray dedicated solely to Flolan mixing. You may use a plastic placemat (a good travel option), a cookie sheet or any other surface that is easy to clean with alcohol. No fabric please.
Assemble all supplies: syringes, Flolan, diluent, cassette etc. Many people make up several bags ahead of time with everything they need for one mix. It saves time to have it ready when you go to mix.
Your instructions may include a repeat of hand-washing at this point.
Remove caps and wipe the tops of the vials with alcohol pads. Follow your instructions to clean the vials. Allow them to air dry.
Open sterile cassette package, keeping red top in sterile wrapper.
Attach syringes as per your instructions. Break the seal on the syringes by gently pulling plunger out then pushing it back.
Draw # ml of air into syringe. Inject into #1 vial of diluent. Draw # ml of diluent from vial #1 into syringe. (Invert vial to remove air). Inject # ml of diluent into each vial of Flolan. (Direct flow of diluent to side of vial to avoid foaming).
Gently rotate the solution in your palms until the solution is clear and all powder is dissolved
Draw up # ml of reconstituted Flolan. Remove air that may be trapped in syringe.
There are a number of steps that will vary from user to user. Essentially you will be mixing the powdered Flolan with diluent (sterile water) and filling your cassette using the instructions you have been given.
Check bag in cassette for leaks. Clamp. Gently invert cassette at least 10 times to mix thoroughly. You do not want to churn it because you do not want bubbles to form.
Remove air by rotating cassette until all small bubbles join to form one big air pocket. Tilt cassette so air is in the corner where tubing connects to the bag. Withdraw air from cassette. CLAMP tubing. Place red cap on tubing.
Label. Mark your cassette with the word "Flolan", your rate, dose and the date.
Refrigerate upright in clean Ziploc bag and store it in your refrigerator This is the Flolan you will use the next day.
Take refrigerated cassette of Flolan from the day before and replace the completed Flolan cassette in your CADD pump.
Cassette and tubing ready to go.
More About Flolan
There are a number of other resources on PHCentral we think might be helpful to a patient considering Flolan therapy:
- Life with Flo: The Series - Read Karen Waters' humorous and informative personal Flolan journey.
- Tips and Tricks / Flolan - Obtain helpful hints on living with Flolan.
- Private Message Board - Ask and receive info from experienced Flolan users.
- Flolan Treatment Page - Review detailed information about this treatment.
Thank you Jenn Lalonde for providing the photos and some of the details for this page.
Page Created - January 2012