Epoprostenol for Pulmonary Arterial Hypertension User Reviews

• iha...
• April 12, 2011

"Flolan is great as a cure alone, I felt the best while taking Flolan. Although sometimes the cure is worse than the disease. Flolan comes with a lot of problems. It is tedious and cumbersome, it is given intravenously over 24 hours, and that in itself is a major disadvantage. It requires a pump that feeds the medicine all day, all night. The pouches that contain the medicine must be replaced every night, and a spare must be carried on the patient at all times. They must be kept on ice to retain the effectiveness of the medicine. Flolan also has a short shelf life, requiring that every night you switch pouches, you must mix the solution for another pouch by hand."

• Anonymous
• December 1, 2011

"I was given Flolan after a major heart attack and bypass surgery. In the ICU for a month, my vitals were failing, and lung function continued to decrease. As a last resort, Flolan was given (on a ventilator this entire month). Within 24 hours, my blood oxygen was near normal, and I was soon off the ventilator. Without this medicine, I would have surely died."

• Tes...
• Taken for 5 to 10 years
• August 23, 2019

"Without Flolan, then Veletri, I probably wouldn't still be alive. My lung pressures were 110 when diagnosed. I've been on the med for 10 years. The side effects have been hard to adapt to, severe, debilitating headaches being the worst for me. I also suffer from leg and foot pain, jaw pain, stomach pains including diarrhea and reflux, which makes eating difficult. I now have anxiety and depression like I've never experienced before. Sometimes I wish I'd never started on this drug that is now impossible to get off."

• Nic...
• Taken for 6 months to 1 year
• September 11, 2023

"Veletri along with other PAH meds saved my life. My pressure was 125 when I checked into the hospital, and I could not walk two feet. I stayed on Veletri for almost a year, but the port got infected often, so I had to be removed and placed on another medication. Veletri side effects can be the worst - pain in legs, jaw pain, anxiety, tiredness, etc. Seems like I had them all but it did turn my health around. I am happy to be on new meds, but Veletri works."