• Let’s Discuss Flolan

    Posted by Colleen on August 18, 2022 at 1:57 pm

    Who among our forum members is currently on continuous intravenous Flolan (epoprostenol GM) or considering it as a treatment for their PH?

    There are a few more PH treatment options available now than when my son had PH. Today I don’t know as many people on Flolan as I used to.

    Although it is a medication that comes with a lot of patient and caregiver responsibility, my husband and I were grateful for it because it really did improve Cullen’s quality of life for 5 years.

    In a recent column, I shared our Flolan experience to offer hope to others considering it as a treatment. Here’s the link to that column:

    Why We Decided to Go With the Flo: Our Experience With Flolan for PH

    What is your experience with Flolan? Do you have any tips to share for future Flolan patients?

    jen-cueva replied 12 hours, 45 minutes ago 3 Members · 2 Replies
  • 2 Replies
  • Colleen-Steele

    April 18, 2024 at 7:26 pm

    No one responded to this post back in 2022 and I’m guess the silence is the answer to my question. Are any of you currently on Flolan or has it recently been a treatment you and your doctor have considered? I’m curious if Flolan is still a common option for PH treatment or is it becoming a treatment of the past and seldom used?

    • jen-cueva

      April 19, 2024 at 2:37 pm

      Hi @Colleen, great question. From what I have read and heard, most PH specialists only use Flolan when the patient doesn’t qualify for most other treatments. Another one I hear is that they start them on Flolan if they need something quick to help stabilize them. Then, they often transition to other treatments, mainly because there are many different options.

      But I would also love to hear from others on this topic. 🤔

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