Treprostinil and Pain: What Users Say

• Eli...
• Taken for 1 to 2 years
• March 28, 2023

For Pulmonary Arterial Hypertension "I have been on IV Remodulin for just over a year, and it has totally saved my life. My side effects include bone and joint pain, jaw pain with my first bite of food (it’s very weird), and itching/rashes. About 10 months into my treatment, I experienced breathing problems due to faulty cassettes (I mix my medicine every two days), which lasted about 3 months until the supply company finally put out a recall on the products. I am very cautious with every cassette and tubing line I use because now I am not trusting they will work properly. Since the recall, I feel wonderful and breathe well."

• Jul...
• Taken for 1 to 2 years
• September 10, 2020

For Pulmonary Arterial Hypertension "Well, I tried Remodulin for 1.5 years and tried real hard to stay on it. The side effects I had were pain throughout my body, which became intolerable, i.e., jaw pain, headaches, total pretty much everything. I am sure this medication will work for some, but definitely need to be aware this is no joke on the side effects. When they say a lil diarrhea, this is a very much under-exaggeration. Just FYI, you've been warned. Best of luck on your journey."

• chr...
• Taken for 6 months to 1 year
• August 14, 2024

For Pulmonary Arterial Hypertension "I was diagnosed with severe pulmonary hypertension. And that's when I found out the right side of my heart was also extremely enlarged. That was about a year ago. So I've been on Remodulin, and yes, all of the possible side effects have happened. I've had to adjust my whole life because of the side effects, but I'm alive today, almost a year later, and I'm able to breathe and very rarely have any dizzy attacks. I was shown to put my site on my stomach, which worked for a while, but I had to change up my sites and had to try my thigh. I've found that with a tubular bandage holding my pump and site to my leg, I don't have so many issues with snagging my tubing and not so many bad site reactions like I had on my belly-no blisters, and swelling isn't so bad at all. I still have to deal with pain for a week after moving the site, but after that, it's way more manageable. As long as I have the pump right by the site under the bandage, there's no snagging, and it's almost like it's not there until it's time to be filled-beep, beep, beep. But much better."

• Red...
• Taken for 1 to 6 months
• May 9, 2017

For Pulmonary Arterial Hypertension "I found it to have horrible side effects that caused me to have to take several other meds to deal with the side effects, i.e., jaw pain, nerve pain in legs, site pain, migraines, dizziness, nausea, confusion, and depression. I did find my chronic cough was almost completely gone, and I was starting to be able to walk further. I stopped after 1 month because the side effects were unbearable."