Yes! I was diagnosed June 2018. They started me on letaris with Adcirca soon to follow. It was about 6 months before I began uptravi. Yes, uptravi is brutal. It's a medication you have to figure dose with titration. Every week increase until you can't take it anymore. At the1000 level I held off increase for an extra week. At 1200 I did the same until stepping up to 1400. I did 1400 for week and a half before asking to going back to 1200 twice a day. That has been my dose for a year now. Most of the symptoms have leveled off. All these med need to be taken with food and preferably with fiber of some type or very loose bowels can be experienced. My PAH symptoms have gotten better. I'm still on oxygen full time. But my walk distance has steadily increased. Energy level way up, fatigue level down. I do have to watch how much I do and discipline myself to get my feet up every day for at least an hour. Incredible difference from two years ago when I knew I was dying!
Maybe once you both get vaccinated, he'll allow someone in to help both of you. Do you have a therapist to talk to about your depression. You could take medication for it. Any children or friends that could help? Phone call to friends might help. Good luck and please don't give up. 😷🤗
im taking all three for over 3yrs now.the only side effect i have that is constant is the amount of erections i get from the adcirca.im not even kidding.my dr said that may happen.so now my wife is threatening to leave me and the dog wont come out from under the coffee table.
Thank you for your PAH war stories! It is a battle for sure! I have a rapid progression of the disease. Diagnosed and put on oxygen 24/7 back in 2017. Now on IV Remodulin. I miss the Uptravi but it apparently wasn't doing the job of slowing my disease progression. I am at my doctor's recommended dose of Remodulin IV. I really hope this works. I know a man who had a lung and heart transplant about 2 years ago. I had to put him back on my prayer list recently as his body started rejecting his new lungs. He is back in hospital in AZ. The average lung transplant last about 5 years. His positivity has never waivered. An inspiration to me even as he is confined to the hospital. So brave! I pray that I will snap out of this depression soon. I cry throughout my days, binging on "The Waltons" and "Little House on the Prairie," getting dressed only for a doctors' appointments and visits from the kids. My husband is having some coping issues. He often yells and complains about his pitiful life. Stuck taking care of me and the house is too much for him. He rides on an electric scooter to get around as neuropathy still interferes with his walking. His hands and arms ache so much that they started going numb. He has spinal stenosis. He had back surgery to remove calcification that was pushing his spinal cord almost shut. He should have the same surgery on his neck. At any rate, he wants to die. He is so depressed. It worries me. I wanted to get some help (the state will pay for it) but he refuses to have strangers in his house especially now due to the pandemic. Sorry to bore you with this. It's after noon and I am just getting out of bed. Ho hum.