Yes I am on sotatercept I have been on it since July 2. A few weeks ago I had a echo and the pressure in my lungs was way down to 39. The Dr also ssid my heart is looking normal again. So yes it is a game changer!

@Janetz-Amen sister! it took me 2 months to the day almost, of constant calls between about 8 or more entities or people pretending to be involved in the uptravi (specialty pharmacy lifelong twisted joke of a game)! Why in the freakin heck does specialty pharmacy involve so many pointless waste of space positions? To only delay the medication further and cause more pain suffering and damage while waiting even longer? Letairis was a month and a half of the same things, less entities but not by much.
They need to pay us for all the work we put in that their job title/role enlists them to be doing!

Wow. Could it be any MORE confusing? Sotatercept is only approved for Group 1 at this point. I sure hope things get clarified for you guys.

@cindy213 Omg!! That's so freaking amazing!! That gives us some more hope! We were just told by his new PH specialist that he'd need to go to stay at the hospital for a week and get the pump medication. He was one of the worst drs (to date) that we've seen that had nothing positive to keep the hope and fight strong rather than comments about how he's 'got a pretty good case of PH' (I felt stupid when later in the visit I had realized he didn't mean good as in GOOD but really meant bad! Not only stupid but I felt my heart break into a millions pieces upon that realization & whilst holding our 16 month old sitting on the floor in the hospital room as he told us that he wouldn't make it more than 2-3 yrs at this rate). He destroyed the hopes Id put soo much effort in to helping him get and then to hold on to that with each struggle he encounters he loses a bit more . So I told the PH Spesh that I already knew Jason would absolutely not be admitted to the hospital for a week. He's got a fear of being left in a hospital for whatever reason and I proceedes to request the info on option 2 & low and behold!!! He said, 'well, this option is a long shot and it's not a guarantee but I'll get the pamphlet so you can read over it and come back with an answer. I got out to the car and I glance at the pamphlet and I screamed in excitement!!! YES BABE, THATS WHAT WE WANTED!!!
IVE got goosebumps just retelling it. I'm excited for the option! I read about this med along time ago and requested it from his cardiologist but she denied him and didn't know Jack about it. He could've been suffering less had she listened to me instead of putting him on uptravi and almost killing him instead!!

@ LaceyBallantyne. When I had my first RHC my pressure was 96 and 6 months ago it was 86 and my heart was moderately enlarged and alot of other stuff was goig on with the heart. It is all so much better since sotatercept. God bless. And you are welcome.