Remodulin for Pulmonary Arterial Hypertension User Reviews
Remodulin has an average rating of 5.6 out of 10 from a total of 5 reviews for the treatment of Pulmonary Arterial Hypertension. 40% of reviewers reported a positive experience, while 20% reported a negative experience.
- Juls
- Taken for 1 to 2 years
- September 10, 2020
"Well I tried Remodulin for 1.5 years and tried real hard to stay on it. The side effects I had was pain throughout my body which became intolerable ie.jaw pain,, headaches, total pretty much every thing. I am sure this medication will work for some but definietely need to be aware this is no joke on the side effects. When they say a lil diarrhea this is a very much under exageration. Just fyi you've been warned. Best of luck on your journey"
- Red7i...
- Taken for 1 to 6 months
- May 9, 2017
"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"
- Eliza...
- Taken for 1 to 2 years
- March 28, 2023
"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."
- Llpor...
- Taken for 1 to 6 months
- August 13, 2020
"I take this Remodulin sub q and it has greatly increased my breathing. I lost weight and I have a lil diarrhea. I have no appetite. Headaches can be painful when titrating. Site pain is there until it falls asleep. Generally takes 7 days once new port is put in place. You change out every 6 weeks or longer or shorter. I suggest good pain management for the bad week (the 7 days waiting on site to go to sleep). Gabapentin with Acetaminophen-Hydrocodone cut my hell week to 4 days. With improvement I'll be able to take the pull form I hope. I hear the IV version is not painful as sub q."
- Amber
- Taken for 1 to 2 years
- April 22, 2023
"I have been on Orenitram for PAH for 2 years now and have started getting severe migraines at night, usually around 11 pm. I had the long covid for over a month. Is this a side effect of this medication? I did not take it on two different nights and had no migraine. I am wondering what can cause this to happen, as I have had no other medication changes."
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"The doctors in my area had given me two months at the most. I was taken by ambulance hospital on the verge of death ,unable to breath , kidneys shutting down , When I got there it was not looking good for me. They diagnosed me with Pulmonary Hypertension and started me on remodulin intraveneously which had to be increased gradually over a period of six weeks. The symptoms were pretty bad usually after an increase which was done every two days. But I started improving after a couple of weeks I was totally off of the oxygen and the cough I had for almost a year went away . Before leaving the hospital I had to learn how to mix the remodulin and how to change the pump- something I have to do every other day . Its compact it is just always attached to me However by wearing coveralls to conceal the tubing and keeping it in my pocket I have been able to return to work . I feel so much better occasionally have trouble sleeping , but not a lot of side effects"