Winrevair (Sotatarcept) Side Effects

[meghan-nevada]

Hey y’all,

Sorry for the delay in response and thanks for checking on me. I don’t always get the email notifications from the forums for some reason…

Anyways, @jen-cueva yes I am still in Texas 🤠

I was recently admitted to the hospital for a potential central line infection (4th admission in a year!). Fun fact for anyone on Veletri, apparently the CHG bio patch can sometimes cause skin irritation or a chemical burn when your skin gets a little sweaty. Which in the summertime…in Texas…is quite often. I’m not a very sweaty person to begin with, but slowly since April my skin under my bio patch started getting red. I never thought anything of it, I just did my thorough dressing changes and went about my business. Well over time the red ring became slightly larger, until a few weeks ago it was about the size of a nickel (still completely under the bio patch, no redness anywhere else) and when I did my CHG cleaning my skin started bleeding around the catheter. So off to the hospital I went. No infection, cultures came back negative, but since I had an open wound around my site they had to take the line out anyways and put in a new one.

Since my new line I have had no rash on my face…. Now I’m analyst, so naturally I search for a logical explanation to anything and everything and now my theory is that it wasn’t the Winrevair causing my rash, but my skin telling me “hey, we don’t like this patch, we don’t feel good, do something!” I also think this because after my initial post I realized I have had this facial rash sporadically since about May. But I got y’all talkin’ didn’t I 😉

Anyways, on to the Sotatarcept/Winrevair… I have had 4 doses and I am on my maintenance dose. I feel great, I feel like I can do more and move around much better. I am lifting weights again and more confident in walking longer distances. Flying also does not bother me as much – this past weekend I was able to walk through the airport without stopping! Mind you, I still walk very slow, but a win is a win.

I thank the Lord for the patients, doctors, researchers for finding this solution. I hope it keeps working for me so one day I can get off the IV. I hope it keeps working for everyone else as well. And most of all, I hope it opens the door one day that leads to a cure because we have thangs to do and lives to live. 😎

[jen-cueva]

Hey @meghan-nevada , it’s so wonderful to see you updating. Although, I’m sorry your skin wasn’t working well with those patches. And OMG, you sweat enough in the summer in Texas.

I hate to hear you had to be at the hospital, but I am happy that you have found that you need to try different patches. It’s so crazy, as everyone’s skin reacts differently. It’s almost a trial and error, as some home health nurses offer several varieties to see which one usually works best for each patient.

However, I am so grateful that the Winrevair is helping. It sounds like you see many improvements, and I say take each little victory, my PHriend. And we celebrate these victories right with you, Meghan! 🎉

Thanks for sharing and please don’t be a stranger! I know many others can benefit from your shared experiences.

Take care and hope you’re getting some cooler weather now.

[jen-cueva]

@Rivegauche610 , you may also find this post helpful, as some others have shared their feedback on sotatercept/winrevair.

[Rivegauche610]

Thank you.