The Gold Standard

Flolan (epoprostenol) was the first FDA-approved treatment for PH symptoms. It only lasts a few minutes in the blood stream, which is why it needs to be delivered continuously by IV through a permanent catheter placed in a large vein going into the heart. Complications can include jaw pain, foot pain, headaches, rashes, as well as site infections. Not all patients experience all these problems. Flolan can cost approximated $100,000 a year, but may be higher depending on a patient's dosage.

I have not been put on Flolan to treat my PH symptoms, and I may never need it. It's a powerful medication that has helped many PHers improve, but the risks may outweigh the benefits for some. In my case, because of the 2 holes in my heart, my cardiologist feels that Flolan would be a last resort option for me, most likely if I were waiting for a lung transplant. The risk of line infections is too great at this point, when I'm doing considerably well. But I know if I ever needed Flolan, I would do it. Anything to keep me going, even for a little bit, is worth it to me!

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