Uptravi and Pain: What Users Say

• Nyv...
• Taken for less than 1 month
• April 7, 2016

For Pulmonary Arterial Hypertension "I am on my second dose of 400 mcg 2 times a day. The doctor is going to have to lower it to 200 mcg. I felt good at that dose. Side effects are pain in my legs and arms and restlessness. When I was on 200 mcg twice a day, they were mild side effects. When I upped the dose to 400 mcg 2 times a day, the side effects were terrible. I can't deal with that kind of pain. Too much. Guess my dosage is going to be 200 mcg a day. It's only been 2 weeks. But at least I don't get short of breath. I get tired because the pain is so bad. Everyone is different, so I would recommend it. I will be back in a month or two for my other rating. I haven't been taking it that long. I just can't stand that pain."

• One...
• Taken for 1 to 2 years
• September 21, 2024

For Pulmonary Arterial Hypertension "So far, I can say this medication is working. I was on a Flolan pump for 30 years, and this got me off that. I take 1000 mcg twice a day. My biggest issues are insomnia, more anxiety, and pain. I had to start taking sleep aids to sleep. I ever had an issue before. They got me to 1600 x 2 a day, and I had to go to the hospital, I was so anxious I could not calm down. It was a little scary. The doctor immediately took me down to 1200, then 1000 twice a day, and it helped. Some stomach issues, definitely less intense with food, but food does not make it totally better, just a little better. I am more agitated and irritable, and it is harder to calm down. My body just feels wound up, and I get anxious more easily. Go slow is my advice."

• Ubi...
• April 14, 2017

For Pulmonary Arterial Hypertension "I am with this medication for 2 months at 1600 mg twice a day. I don't feel it helps me, and I have a lot of side effects like headache, hot red flashes on my face, eyes, pain in my legs, arms sometimes, diarrhea, and less appetite. I hope continuing this medicine improves my breath because I'm not okay right now. I'm taking Adcirca and nitric oxide, this is a study."

• jna...
• Taken for 6 months to 1 year
• January 18, 2020

For Pulmonary Arterial Hypertension "Been on Uptravi since 2019, starting dose was 200 mcg X2 seemed to help, have increased dose slowly to 1000 mcg X 2 for the past 5 months. Yes, have had some side effects: itchy, red rash, jaw pain. I am on oxygen for the past 3 years, and I am a sassy 83-year-old. I find if I titrate up for a couple of weeks at 200 mcg only at night and then when my body seems to handle (2 to 3 weeks) it, I move to 200 mcg during the day (2 to 3 weeks)! Seems the doctors rush to get us too 1600 X 2. Sorry for all going through the pains and illness of pulmonary hypertension and pulmonary fibrosis."

• Tam...
• October 11, 2017

For Pulmonary Arterial Hypertension "I'm having the same as another person. I'm on 400 mg twice a day. In so much pain. I asked my doctor's nurse what to do, she said my body needs to get used to the pain! I need to talk to my doctor, he's out of the country. I'm not getting it, this much pain and still can't breathe right? I guess I will have to stay at this level, no way I'm moving up!"

• JuC...
• Taken for 1 to 6 months
• March 6, 2019

For Pulmonary Arterial Hypertension "I started at 200 mcg on 2/7. Side effects escalated, so by the next titration of 400 mcg, I was in so much pain, it hurt to move, and my jaw pain was ridiculously annoying. I never experienced muscle pain like this before. I told my nurse when he came. I was supposed to go to 600 mcg, but they set me back at 200, which is where I still am. If I didn’t have severe side effects, I’d already be at 1200 mcg. The good part is that I found that I breathe a lot better and had more energy. Even my cough wasn’t as bad. The downside is that I began to have diarrhea, and that sucks. The pain of diarrhea, not being able to eat, absolutely no appetite. What do I do? Imodium isn’t working. I’m stuck in the house. Sorry to say the good doesn’t outweigh the bad, and I’d rather not be on this medicine."

• Kit...
• September 16, 2019

For Pulmonary Arterial Hypertension "I've first used Uptravi 2 years ago, but it was causing me so much pain I quit all my meds. I got worse, had to go to the ER, and tried to get back on the Uptravi. Nope, too painful. I took a break from Uptravi for 6 months and just started again, saying to myself I won't give up. It has me in so much pain, I can't take the pain. I cry and just want to quit. My boyfriend has been so helpful, I don't know how he can handle me with all the side effects. He is great."

• Hea...
• Taken for 1 to 2 years
• November 28, 2020

For Pulmonary Arterial Hypertension "I fought through the headaches and made it to the top 1600 mcg. I have loose stool and occasionally have jaw pain, it's more of a sour pucker pain. One time a day, 2 days a week. I went from severe to moderate in 1 year. I get around much better now."

• new...
• Taken for less than 1 month
• November 29, 2022

For Pulmonary Arterial Hypertension "I just started this drug a week or two ago. I experienced lower leg pain, so the nurse kept me at 200 mcg two times daily, but my symptoms have eased some, so I'm hoping I can tolerate a higher dose. My fingernails aren't blue anymore."

• Thi...
• Taken for 2 to 5 years
• March 19, 2025

For Pulmonary Arterial Hypertension "Four years I’ve been taking Uptravi, and it’s been a miracle for me. Before starting, I had to be on oxygen and was homebound. I couldn’t make it to my door without feeling my lungs burning. I was taking Opsumit and Tadalafil at the time, but they weren’t enough. My doctor told me about Uptravi, and I said I would try it. When I first started it at 200 mcg, I was amazed at how I could breathe on my own again. I felt strong enough to go grocery shopping and walk to the mailbox. When I titrated up to 400 mcg, I was miserable from the headaches and jaw pain. I almost gave up, but instead, I did some research and discovered that this medication can cause dehydration. So what helped me get to 1600 mcg and still helps me four years later is a combination of Opsumit, Tadalafil, and Uptravi taken with two Tylenol and a 16 oz bottle of water in the morning, and 12 hours later I take two Tylenol and my second dose of Uptravi with another bottle of water and no side effects! Hope this helps."

• mar...
• Taken for 1 to 6 months
• May 1, 2018

For Pulmonary Arterial Hypertension "I dread having to take this medication. The pain from the side effects can sometimes be unbearable. I don't see how anyone can possibly reach the maximum dose."

• Anonymous
• Taken for 1 to 6 months
• April 18, 2021

For Pulmonary Arterial Hypertension "I cannot stand the pain of 400 mcg twice a day, so I'm going to ask my pulmonologist to put me back to 200 mcg twice a day. I'm not willing to live with this pain if I don't have to."