Uptravi and Headaches: What Users Say

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

For Pulmonary Arterial Hypertension "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."

• ron...
• November 14, 2016

For Pulmonary Arterial Hypertension "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

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."

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

For Pulmonary Arterial Hypertension "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."

• 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."

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

For Pulmonary Arterial Hypertension "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

For Pulmonary Arterial Hypertension "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..."

• 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."