I sat in a session on Winrevair at the PHA's Professional Network Symposium. There are concerns of low platelets and high hemoglobin. https://www.winrevair.com/side-effects/

A couple of months ago, the study abruptly changed course for many people in the trials. Many participants are having to do bloodwork more often and may or may not be eligible for their next scheduled dose, depending on their levels. If anyone has low or even borderline low platelets to begin with, has a history of blood clots, or bruises easily, I advise you to speak in depth about your levels and ask your physician to review the platelet and hemoglobin cut-off numbers, well before signing up for the trials.

I can't imagine the worry and setbacks one would face having the drug seemingly, haphazardly given to you (knowing it's the opposite of that).

Moreover, it concerns me greatly because I know people who trust their primary care physician with their PH management (I will never advise this!) and take ONLY Winrevair. If they suddenly don't get their dose, what then? It's scary.

Who puts a patient with severe PH on oxygen and Winrevair only? Sore spot for me!

*In my opinion, this medication is not sufficient as the sole treatment for PH for anyone with severe PH. The gold standard is 'gold' for a reason. If the patient refuses the IV, then you can use Uptravi or Adempas, not a trial therapy out of the gate!

I digress, My bad...lol I know this drug is helping people, and bashing it. Truly! I would be on it if my platelets weren't low and I didn't have a history of blood clots. It's a fourth therapeutic pathway. We should all be on it if it's safe for us.

I am grateful for Winrevier! I am not particularly grateful for physicians who do not do their patients justice. I can not help but think of the kick-backs that come with new drugs, and wonder if someone got a vacation out of taking years off a patient's life. It's sickening!

I've seen too much... patients have to be educated enough to take care of themselves and to know they are getting the best care possible, as we are all different. Wishing you all the best! Please keep us updated on your journey.

Possible Side Effects of WINREVAIR™ (sotatercept-csrk)

https://www.winrevair.com/side-effects/

As a side note. Winrevair is in cinical trials for my sub-group (#2). My clinic is submitting me as a possible patient to participate in the trial.

Nilda...At this time, you can only take Winrevair if you are in group 1, PAH. If you are in Group 3, then you don't have PAH...You have PH. And if so, you can't take Winrevair. Most of the people here with ILD are in Group 3 but some in fact are in Group 1...It's important that you know. How were you diagnosed? Did you have the RHC? An RHC is the only truly confirmable way to diagnose PH.

Remember, while all PAH is PH, not all of PH is PAH. The terms are NOT interchangeable.

Is your doctor truly a PH specialist? Many cardiologists and pulmonologists claim to specialize in PH but actually don't...PH is so complex, that it would be hard for a doctor to specialize in PH and also treat other ailments. I see 1 PH specialist, 2 cardiologists and 1 pulmonologist.

Thank you so much for the specific answers.
I don't recall being placed in any specific category or group other than it seems I may be in group 3 due to other chronic lung conditions, and maybe 5 due to how PAH has affected my right heart.
I was diagnosed with Interstitial Lung Disease (ILD) about 11 years ago. I started developing more lung issues about a year and a half ago. I was finally diagnosed with PAH in November 2024. Things escalated on New Years Eve 2024, stayed in the hospital about a month, and was started on Remodulin since then, plus a few other meds for other conditions. Slowly declining condition. This is the first time Dr spoke to me about Winrevair.

Here's a cut and paste generated by AI explaining the 5 groups.

The World Health Organization classifies PH into five groups based on their underlying causes: Group 1: Pulmonary Arterial Hypertension (PAH) This includes your diagnosis of IPAH. It happens when pulmonary arteries become narrow and stiff, making blood flow difficult. Group 2: PH Related to Heart Disease This type develops when left-sided heart problems cause increased pressure in the lungs. Group 3: PH Related to Lung Disease Chronic lung conditions can lead to this form of PH. Group 4: PH Caused by Blood Clotting Disorders Blood clots in the lungs can create chronic pressure issues. Group 5: PH Related to Other Miscellaneous Conditions This catch-all group includes PH from various other medical conditions. Understanding which group you fall into helps your healthcare team create the most effective treatment plan for your specific situation.