Have you heard the exciting announcement about the official approval of Yutrepia?

[carol-volckmann]

Hi @jen-cueva This is very big news, thanks for bringing this to the forum.

I have been on first subQ remodulin then IV treprostinol. I will talk with my Pulmonologist. It would be great to free myself of the IV and all the supplies, mixing etc.

Looking forward to hearing more after you have been on it. I know other inhaler meds have not work so well – number of times a day and trying to split that up and side effects. This new inhalant might be a real break through.

Thanks again sweet woman! Sending positive vibes, hugs and love ❤️

[jen-cueva]

Hello, sweet PHriend, @carol-volckmann , thanks so much for your words of encouragement about Yutrepia. My appointment with Channick is next week, so I hope to know more details then about when I will have access to begin this treatment. 💜

It would be incredible if transitioning to an inhaled treatment became an option for you at some point. I recently heard about a couple of new inhaled treatments that are in development, which gives me so much hope. I’m keeping my fingers crossed that one of these will be something you can use, too. I can only imagine how much freedom that would bring you—it must feel like such a heavy burden at times. I recently got rid of a small cast, and even that felt like a huge relief, so I can only imagine how transformative this could be for you.

Please know I’ll be hoping and praying for better options to come your way soon.🙏

[carol-volckmann]

Hi @jen-cueva I am holding my breath for you to find out what Cannick will reconmmend for you – this new inhaler could be a real game changer for you. Fingers crossed 🤞.

You must feel such relief getting out of your cast 🎉Yaya!

Thank you for your positive thoughts and encouraging words. You are always right there supporting and caring – thank you!

All is well here, weather is great high 60’s low 50’s at night, sunshine and flowers are blooming.

You have a great rest of the week, sending warm hugs with lots of love ❤️

[Colleen]

Great timing @jen-cueva ! @Rivegauche610 just shared they will be starting this soon.

[Rivegauche610]

Well…Yutrepia isn’t in ANYONE’S formulary yet and probably won’t be in the VA’s for a year or more. Maybe some of the supplements I resumed have ameliorated the Tyvaso cough so perhaps it won’t be as bad as it was.

[jen-cueva]

Hi @Rivegauche610 , Can you remind me—are you using the regular Tyvaso or the Tyvaso DPI, the dry powder version with the smaller inhaler? I’m asking because I spent the weekend with two fellow PHriends, and one of them uses Tyvaso DPI. She mentioned it’s been a game-changer for her compared to the Tyvaso she used a few years back. Just curious about your experience!

She shared that she sets phone alarms to remind herself to drink water and even did a treatment while hanging out without any issues. She coughed once after, but not the nagging cough she had with regular Tyvaso. Just wanted to share her experience with you.

According to my pharmacist on Friday, Accredo Specialty now has access to Yutrepia. While that’s not the VA, it might mean the wait won’t be as long as you expect.

T
ake care, and thanks for sharing your experiences with us!

[Rivegauche610]

Tyvaso DPI, and I get a lot of coughing after each dose especially after doses three and four. Because my PAH is so mild, my pulmonologist has suggested I could go with three a day and still probably be fine. So at night if I feel a little tight, I use one puff of albuterol followed by a long Listerine (with alcohol) mouthwash because if you don’t get the albuterol out of the mucus membranes in your mouth, you’ll get some side effects.

I’m sure Accredo will be happy to charge those who can afford the $28,000 a month retail cost. As for the rest of us? Meh…

In other, potentially more exciting news, Cereno’s CS-1 it has been approved for a phase 2b clinical trial by the FDA. It should be available to us in late 2026. If it is successful, it will be the game changer because it reverses the vascular remodeling in the lungs. Yes I said reverses. This is what I’m really waiting for, if I live that long.

[drew12]

I was on the trial of this drug after being on tyvaso for a few years. It’s very small, you can carry it in your purse. The only downside was using it 4 times a day, I just set an alarm on my phone, it just takes a few minutes to set up and use. When I started the trial probably 4-5 years ago , I could use it in public people just thought I was vaping 😁. Side affects are low maybe a small irritation in the throat right after use but it goes away. Big plus is it really works!

I’m on another test trial now Pharmosa/Liquidia which should be approved soon as well. I do like this one better because there are absolutely no side affects at all! Used twice a day and it works great!

There’s some great drugs coming! I’ve been on soo many over almost 18 years so happy now to a normal life again.❤️

[jen-cueva]

Hi @drew12 thanks for sharing your experience as well as your excitement about the new upcoming treatments in the pipeline for PH! It’s such an exciting time.

This past weekend, I had the chance to catch up with two amazing PHriends—each of us living with a PH diagnosis for over 8 years! We couldn’t help but reflect on how far we’ve come and how grateful we are for the growing number of treatment options available now (and the exciting ones on the horizon) for the PH community.

When I was first diagnosed 20 years ago—yep, just a 1-year-old, haha—there were only three treatment options. Look how much has changed! It’s incredible to see the progress and feel the hope for what’s to come.💜

[Lynda]

When I saw this update a couple of weeks ago I thought it was the clinical trial I have been on for the past 2 1/2 years that has ended in May so I was very excited the I was informed that this is not but the same type of trial. The good news is they are working on several different avenues to combat this disease!