I haven’t switched yet, but hopeful to do so in the future. I am on IV Veletri and my doc has decreased my dose significantly so we would be able to transition to subq. I decided based on other patient’s stories that I did not want to experience what subq had to offer lol. I just met with him and had an echo, he said oral could be a…

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Of course Colleen, just let me know

If you, like me, have recently begun using Winrevair, have you experienced any of the following?

1. Unexplained increase in A1C?

2. Unexpected changes to cholesterol, HDL, LDL, etc.?

3. Any of the documented SEs such as nosebleeds and the scary-looking subcutaneous bleeding-blotch where you haven’t bumped, poked or scratched?

Just curious as all…

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Thank you @Colleen and @jen-cueva so much for your thoughtful responses. I have not switched over to the oral from the IV. I will see my Pulmonologist in Oct – I was hoping to hear from some of the Forum members what their experience has been. Jen, it is good to hear you tolerated the oral very well and it did help you.

Colleen, I am scheduled…

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I began Winrevair several months ago. I also take modest doses of Ambrisentan, Tadalafil and Yutrepia in addition to common adjunct meds that support the PH therapy systemically (Carvedilol, Eplerenone, Bumetanide and Jardiance).

Had bloodwork a few days ago and it revealed an unexpectedly high A1C and similarly uncharacteristically…

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Hi @Colleen-Steele , This new private space is a wonderful option for forum members who prefer not to share in the public forums. Here, you can post freely without worrying about who might be reading.

For those of you who are active in the public forums, we hope this area encourages you to open up and share more personal details. We…

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Hey @Colleen-Steele and forum members. I hope everyone is doing well. It’s been awhile since I’ve been in the forums and I’ve missed you all.

This month, I have had several labs and an Echo, and have a kidney doctor appointment later this month. Otherwise, I’m enjoying, “Mimi” life and cuddling with my sweet little grandson.

@Colleen-Steele ,…

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Hi @carol-volckmann , I hope you are doing well this week, dear friend. I haven’t been on IV or Subq so I can’t speak to that transition to Uptravi. However, I was on Uptravi for years and did well on it. I’ve also heard of others who made that transition and also tolerated it well.

As you know, our bodies are so unique, it’s always worth a try…

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Hi @Grandma , I’m sorry to hear of your heart attack and stents. If you don’t have PH, do you have something called ATTR-CM, or something similar? This is a website for Amyloidosis and covers ATTR-CM. Here’s the link to that site, and you’ll also find a forum there, I believe.

https://amyloidosisnewstoday.com/what-is-attr-cm/

We don’t have a…

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I think I must be on the wrong forum. I do not have PH – but I am having strange symptoms five months after a “widow maker” heart attack with stent placement. Was just wondering if other people have experienced the same thing. Perhaps someone could guide me to the right forum?

@carol-volckmann would like to ask the forum if anybody has experienced switching to oral Uptravi from Remodulin IV or subQ.

I understand from the article in PHA that patients have switched successfully and are no longer dealing with all the burdens an IV line.

My September appointments only includes a Pulmonary Function Test and various labs.…

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@carol-volckmann I will reshare your question in another area to hopefully get response from our members. Did you have your PFT yet and if so, how did it go?

@Grandma I am so sorry to hear of your heart attack! I will keep your continued recovery in my prayers.

Thank you for sharing what your symptoms were because it is a reminder that signs of a heart attack aren’t always obvious and that it’s best to be seen by a doctor when unusual symptoms occur. It’s safer not to assume it’s something…

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@Grandma shared the following update. I am reposting it here to make sure our members see it. Please offer her our support!

5 months after a stemi heart attack with stent placed in the 100% blocked heart artery. Have several others that are 50 to 70% blocked that were not stented. Initially I felt really good – returned to my Silver Sneakers…

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Hello @Colleen , I would like to ask the forum if anybody has experienced switching to oral Uptravi from Remodulin IV or subQ. I understand from the article in PHA that patients have switched successfully and are no longer dealing with all the burdens an IV line.

My September appointments only includes a Pulmonary Function Test and various labs.…

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Have you or someone you know fundraised and/or spread PH awareness in an unusual but successful way?

A friend called, excited to tell me she was watching the game show “Who Wants to Be a Millionaire,” and rapper Awkwafina was competing to raise money and awareness for the Pulmonary Hypertension Association!

The episode aired on August 19, 2026,…

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Please don’t make this a Silent September! We want to hear from you! Please share your upcoming medical appointments, procedures, new treatments, etc. with us. Tell us how you are feeling and what your hopes and expectations are as we begin a new month.

@carol-volckmann you and Dick are so blessed to have the marriage that you do! True soul mates! Your perspective on the good and bad in live is refreshing.

Hello sweet woman. Thank you for checking in on me. You always put a smile in my face and in my heart. I have been pretty much the same. I’ll take that as better than feeling worse.

It is sometimes very difficult to look reality square in the eye and knowing it is what it is and be greatful for that. We are both here in our home, loving each…

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In November 2025, after 30 years on the market, Flolan was discontinued as a PH treatment. Were you on Flolan when this occurred, and if so, what did you transition to? Would you go back to Flolan if it became available again?

Here are two articles regarding the farewell to Flolan.

…

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@carol-volckmann just checking in again. I’ve been worried about you.

Hello @Carmela ! How are you?

Jen. Coleen. ??

You have a lot on your plate @carol-volckmann . You remain in my prayers! Any plans for the weekend?

Do you struggle with weight loss, and if so, what has been attributed to the cause?

If you have been trying to gain weight without success, do you and/or your doctor believe PH and/or its treatments are the cause?

Do you have any recipes or foods that you can recommend to help patients who are struggling to gain weight?

I invite you to “weigh” in…

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Colleen you are so sweet and caring. You also keep me on my toes with your follow up questions – I love you for it!

I did see my Cardiologist yesterday. Pretty much had a positive visit. My last echovand RHC all show my PAH and heart issues are pretty much stable. That is the good news.

My other contributory issues i.e. Sclaraderma still…

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How is your medical calendar looking so far for August? Will it be an, “Agh, August” or do you feel like the month will be manageable?

Share you upcoming appointments, procedures, new treatments, etc. with us. We are here to support you!

@carol-volckmann It means everything to have a doctor you trust!

You mention your cardiologist. How is your heart doing? Is there any possiblity your heart is contributing to the bloating/distension? When was your last right heart cath? I realize you have other health problems that cause your stomach issues but sometimes conditions can…

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Thank you Colleen for asking. I saw my Rheumatologist yesterday and he is trying to figure out why nothing has worked to reduce my severe bloating. He wants me to have an MRI of the wall of my bowel to see if there is thickening. I am trying to schedule that. He keeps thinking out of the box. That is why we both like him.

I see our…

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@carol-volckmann How are you feeling? Is your doctor trying anything new to help you?

@mikebennett Thank you for sharing your experience with Sotatercept and the decision you made regarding Remodulin. I appreciate that you pointed out that the effectiveness of any PH treatment, as well as its side effects, is different for everyone.

My son was on IV Flolanand triple oral therapy. He went through a period of doing very well and…

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I’m not sure this should be an either-or question. I was in a clinical trial for Sotatercept, so have been on it about 3 years now. I was on IV remodulin with sotatercept when I started, and was doing well. But for a lot of reasons (risk of infection, quality of life, etc.), I tapered off IV Remodulin. On Sotatercept alone (+ Ambrisentan…

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Thank you Cullen for your insights and support. Absolutely we need to just keep going.

You have gone through so much beginning at such a young age. You truly are an inspiration.

Thank you again for reaching out. Always my very best and warm wishes.

Hi @carol-volckmann , I am sorry to hear about the current struggles you are facing lately especially regarding your ability to breath. I know this can at times feel especially discouraging especially when it impacts our daily activities or other activities we enjoy doing.

With that being said as you mentioned the change of weather can often have…

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@carol-volckmann I am so sorry to hear that you have not been well. I’m sure the heat isn’t helping any! Lack of sleep is also a heavy brick to add to the pile of complications you are carrying. Is there anything I can do to help you?

My husband bought me a heated eye massager many Christmases ago. I thought he was crazy because it looked…

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@carol-volckmann Thank you for the update, although I wish it were better news! I am sharing it here to make sure all of our members find it.

Update from Carol: Hello Colleen, I have not been feeling great. My shortness of breath has gotten worse. Trying to do my daily walks is difficult in warm weather, so I don’t go as often nor as long.

I will…

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Have you used Amazon for prescriptions? If so, what was your experience?

Due to a change in insurance, using Amazon for prescriptions recently became an option for my son and me, but I declined. I especially had concerns about relying on them to fill and deliver specialty medications.

I have read reviews that justify my concerns, but what are…

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How is everyone doing this month? Have you had any appointments or one coming up that you would like to discuss?

Good question! @Debi How has your cardiac input been?

@Debi If you are going to be unique, not having symptoms is a wonderful way to be unique! Thank you so much for sharing your experience!

Welcome to July! I hope our Americans and Canadians enjoyed the 4th and Canada Day!

What is on your medical calendar this month? Is there anything coming up that you would like to discuss?

We are here to offer support!

Hello there Jen Cueva,

It has been a Minute! I am on Adempas, and Opsumit and just began to feel Sooo much better that I just got busy doing life and I forgot about the forum ….

So what brought me back? UPTRAVI has just been added to my list of prescription and I DONT like the side effects. So Back to google to find out info on it and the Forum…

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Debi,

I am on the exact same medication as you are. Have your doctors said anything about cardiac output since you started Winrevair?

Taking one day at a time. Feeling blessed to be seen out and about. Grandkids get most of my attention. I truly don’t have any reason to complain. I know that PH can dramatically affect my health at the drop of a hat, so, I try and keep a positive outlook. It isn’t always easy, but worth it!

I feel like an anomaly when addressing this question. I don’t get hot and I am constantly cold. It is in 80’s today in NE and I have on sweat pants and a sweat shirt. I am thinking the lowering of blood pressure due to meds may be contributing to this. So no need to manage hot summer months in fact I prefer it hot and humid.

Winrevair is a game changer. My therapies initially were ambrisentan and tadafil. On Winreair (also called Sotatercept) since July 2024. My original number for pulmonary pressure was 62. Recent test shows I am in a very normal range at 22 ! I had an intermittent test 6 months ago – I was at 32. This medication works to bring the…

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