Uptravi for Pulmonary Arterial Hypertension User Reviews

• jug...
• Taken for 6 months to 1 year
• April 23, 2021

"When my doctor told me about this medicine, I was nervous to take it because of the reviews I read. The side effects sounded pretty bad, and at first, they were! Headaches, I mean bad headaches, were the worst. Body ached, but I got through to 1600 mcg. I just had my first echocardiogram since taking the medication, and the right side of my heart has shrunk, its function has improved to normal, and my hypertension in my lungs is lower. I don't know for sure if it's the medication or not, but it is too coincidental not to be. My doctor is very happy! It is working for me."

• Nic...
• Taken for 1 to 2 years
• September 11, 2023

"Uptravi saved my life. Before this drug, I was on a pump for Veletri. Although Veletri worked well, the site of the pump got infected often and my psyche was extremely depressed. Since I started Uptravi, my life has changed. I am all the way up to 1600 mcg/2X per day and couldn't be happier. This is my recommendation for PAH. My heart is not failing anymore, and both sides are the same size!"

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

"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

"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."

• ron...
• November 14, 2016

"It's more convenient than doing a breathing treatment every two hours. That said, I made it to 1200 mcg twice a day. The headaches and body aches are side effects I accept them to breathe better. I am staying at 1200 mcg for 3 weeks now. I still have headaches (migraines) and are not as bad as when I have advanced each week. So this is my vacation before raising my dosage. I'm in stage 3 of pulmonary arterial hypertension and not on oxygen as of yet. I do take two other helpful medicines to help out. As I progress on Uptravi doses, I cut back on breathing treatments (Ventavis) one dose a week. As of today, I have stopped Ventavis and rely on the Uptravi. I hope Uptravi is the answer for helping me breathe better."

• Ubi...
• April 14, 2017

"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."

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

"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."

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

"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

"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

"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

"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."

• Eil...
• Taken for less than 1 month
• March 19, 2017

"I'm on my 2nd week of the titration. I do have some headaches, my skin is itchy, and I have a weird heartburn sensation. However, I will continue, I hope the positive will outweigh the negative. It was hard to get this pill, so I really want to try and make it through this titration. My other meds are Letairis and sildenafil, which I love."

• Jay...
• Taken for 2 to 5 years
• September 22, 2018

"This medication causes excruciating pain that I have explained to my doctors on more than one occasion. Unfortunately, my opinion doesn’t matter to them because I am still taking this medication and suffering. I haven’t been able to go past 600 mcg for over 2 years. I have to take narcotics just to have 2 hours of relief from the pain this medication causes. My shortness of breath has not improved while on this drug either. Currently taking 3 medications for my pulmonary hypertension at 24 years old and have seen no improvement to my condition."

• MJa...
• December 2, 2019

"I started taking Uptravi 2/19 after being on Letairis for 5 years now. At 200 mcg 2x day, my breathing immediately got better, climbing subway steps wasn't as difficult. I was hopeful a greater dose would make a greater impact. I kept pushing through with hopes of better results once the body adjusted to the meds. 1000 mcg was extremely challenging, dizziness and clouded head, pressure in my eardrums, and feeling more likely to faint if pushing myself up a flight of steps or walking distance. Heart racing quickly, more often now, not a good feeling. Still, I pressed on with hopes my body will adapt. 1600 mcg 2x day (max dosage) for six months now. The pressure in the head is really strong. I stay in the house now 'cause walking/commute on NYC transit is a challenge. Can't work outside of home, too unstable. Will request to be reduced down to 1200 with hopes my body can sustain the pressure. Side effects are outweighing the solution."

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

"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

"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."

• nyv...
• January 30, 2019

"I am back, and it has been 2 years. I am still on 200 x a day. I also take Revatio and Letaris now, and I have had 2 echoes the past 2 years. My PAH pressures 5 mmHg. So it is working for me. I have mild PAH. Hope it stays like that for years to come."

• eas...
• Taken for less than 1 month
• December 13, 2018

"1st week 200 mg - fine 2nd week 400 mg - still fine 3rd week - OMG the pain in - well, everywhere is overwhelming. Headache, body ache had to sleep with mother as she was calling doctors at 1:00 am - almost called 911. I moaned every breath I took. I'm sure I'll get used to it - NOT!!! I don't know what to say other than the reviews were totally accurate to the nightmare that I had. At first, I was like - ok, I can do this - maybe I'll be the lucky one who has no side effects - I was wrong."

• Neg...
• Taken for 6 months to 1 year
• January 16, 2020

"Been on Adcirca and Letairis since April 2018. Started Uptravi in May 2019. 200 mg was okay, felt somewhat of an improvement in my ability to walk longer distances. Moved to 400 mg, was very hard and painful, muscle pain in the legs, heels, jaws, headaches. Went back to the 200 mg dose and stayed with it for a month. Then started going up again in smaller steps, first increased the evening dose, then a week (sometimes two weeks) later, the morning dose. Got to 1,400 mg but had to step back to 1,400 mg at PM and 1,200 mg at AM. Plan to continue increasing after some more time. Taking also Tylenol almost every day and sometimes Advil for the constant headaches. Pressures for me, so far stayed the same, more or less. Didn't feel I was getting stronger, in fact, the last 6-minute walk I had a drop. Is it worth it? I don't know. The other alternatives are pumps, so better to try pills before using pumps..."

• Pos...
• Taken for 1 to 2 years
• April 18, 2022

"I took Uptravi for two years. My maximum dose was 1200 mcg 2 times a day. I couldn't get to the goal dose of 1600. I was doing well. Tests came back good, then my health took a big decline. Now I'm off Uptravi and on Remodulin."

• Mem...
• Taken for 1 to 2 years
• June 27, 2020

"I started taking Uptravi in 2019. I made it up to 800 mcg before the muscle pain became intolerable. My breathing has improved, but I’m on other medications as well. I have tapered down to 400 mcg because of the pain. It still hurts, and overall, it makes my body feel extremely uncomfortable. It’s not good to take Tylenol or ibuprofen every day either. Honestly, I don’t remember the ibuprofen relieving the pain. I know one thing: I don’t believe God would use something that causes us pain to make us better."

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

"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."

• ean...
• Taken for less than 1 month
• November 27, 2018

"Only 1 day of taking this, and I'm up at 11:00 pm and itchy so far."

• ean...
• Taken for 1 to 6 months
• December 6, 2018

"Side effects are flushed face, heartburn. It is my second week and just started 400 mg 2 times a day. I'm grumpy."

• ean...
• December 8, 2018

"Oh my goodness. I feel restless and irritable. I have ringing in my ears. These are horrible pills."