I think one of the hardest things is knowing when to push yourself to be social and when to listen to your body and rest. It can be disappointing to cancel plans because of how you feel, but I have found that keeping plans flexible and choosing activities that do not take too much energy can make a difference. It is also helpful when friends…

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It is interesting how PH and PAH can be confusing because the terms sound so similar. Learning the difference and understanding the diagnosis seems really important when talking with your medical team. It also shows how valuable it is to share experiences and information with others in this community. Has anyone found a helpful resource…

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I think finding a balance between health and social life can be challenging when dealing with a long-term condition. Taking time to rest and being flexible with plans seem important, but staying connected with friends and family matters too. I appreciate everyone sharing their experiences because we can learn a lot from one another. How do…

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Choosing health coverage can feel overwhelming, especially when we’re juggling PH medications, specialist visits, and other care needs. I wanted to share a free webinar that may help you feel more informed as you explore your options.

ERDC’s “Medicare Open Enrollment” webinar will cover navigating enrollment and exploring coverage that fits…

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Jen, my blood actually clots quickly for some reason, so I know that the episodes – though scary – will soon be over, and I also felt that the nasal lavage with salt water (distilled) would ultimately help, too, and it did (but I waited until the blood flow slowed before doing so).

Winrevair is to be injected every three weeks but my MD…

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Oh no, @Rivegauche610 ! That sounds frightening, like something out of a Halloween movie!🎃 I’m so sorry you experienced such a terrible nosebleed. Did you have someone with you? Was this your first nosebleed since starting Winrevair, or the worst so far?

I’m glad you let your pulmonologist know. When you started treatment, did your care team…

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Had an experience last night (10/15). As you know one of the SEs of Winrevar is nosebleeds. Well, for ten minutes last night I thought I was in some kind of slasher horror flick because the mother of all nosebleeds was happening to me. So I told my pulmonologist and he suggested 1) delaying my next injection by a week and 2) reducing it from…

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@Cmankin this response if from @MamaBear007 . She is having some technical problems posting so I am sharing her comment for her.

Welcome, @Cmankin. I agree with Colleen, that having a PH specialist is important. The first link she provided will allow you to find PH centers, as well as doctors specializing in PH. You can search any of the…

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@carol-volckmann my fingers and toes are crossing, and I am praying for you!

Happy birthday to Dick! I hope he had a wonderful day!

Hello @Colleen , hope you had a special birthday!

I see my Pulmonologist and also scheduled another ECHO before my visit with him – all the last week of Oct. Fingers crossed that I am a good candidate to switch to the oral – we shall see.

Today received my flu vaccine and next week I’ll get my covid. It is that time of the year.

Yesterday…

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Have you been to any appointments yet this month or have something scheduled that is approaching? How about treatments, anything going on this month that you would like to discuss? Share with us how October is going for you.

You’re welcome! Thank you to the members who have responded. I hope more will jump in an share.

Thank you @carol-volckmann ! It is so sweet of you to remember! How is your week going?

@Cmankin welcome to the PH forums. I am so sorry that you have been diagnosed with PAH. You are in good company here to receive support and PH education. I’m hoping members will jump in to discuss any questions and concerns that you have. I will tag a few of our members to help get discussion flowing. @jen-cueva @carol-volckmann @Rivegauche610 …

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Hello, I new here and wanted introduce myself. I am a mom to 3 grown children and have been pretty active most of my life. A couple years ago I started having problems with shortness of breath , ankles swelling, and this went on for 2 years . I finally got a doctor to listen to me that started running tests , one test lead to another and I…

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@Colleen Hhappy Birthday dear sweet woman! 🎂🌈🎉 I hope I got it right and you are having the best birthday!

I still don’t know if I can switch to the oral- later this month I see my Pulmonologist will update then.

Happy birthday Collleen ❤️❤️

I was on Winrevair. My gums started bleeding and I developed an enemia after a few months. I am no longer on it.

Yes, we still need to let our voices be heard and get this Supplemental Oxygen Access Reform (SOAR) Act passed before the end of 2026! To learn more and write your local legislature. It’s simple and only takes a few minutes. You can use the contact form and email template from PHA , I’ve shared below. You can also personalize the details in…

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I’m currently on Winrevair. I did experience nose bleeds when I first started. But I don’t have them anymore. But my doctor had me on Adempas. I had to get off. It gave me unmanageable heartburn.

I forgot to mention that my A1C has actually been better.

My cholesterol levels seem to have not changed. My blood pressure has been erratic and on the higher side. I started on Ramipril (blood pressure medication) a couple weeks ago, which seems to be helping. The biggest SE I seem to have is dry mouth. Which is a combination of all the medications I take.

Thank you.

@carol-volckmann learning how to mix Flolan and care for the IV was daunting but in no time it became routine. Flolan had to be mixed every day because it had a short shelf life and had to be refrigerated. A challenge, but it gave Cullen 6 years before needing a transplant.

Does the mild weather in fall help stabilize your PH symptoms?

The first day of Fall was Sept. 22nd, and the weather seems to have acknowledged the fact. It’s not too hot, not too cold, and it feels easier to breathe, even for someone who does not have PH.

How does Autumn affect your PH, and if it makes you feel better, what Fall activities do you enjoy?

Good morning @Colleen and thank you keeping your fingers crossed! <div>

Switching from subQ to IV was a no brainer … SubQ was so painful I could not wait to take it out and be done!! With the IV – no pain. It is cumbersome and as you know. Dick and I mix every other week seven cassetts, then you always have the pump and the line to contend to…

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@Rivegauche610 I’m tagging some of our members who I believe have or are on Winrevair. I don’t have personal experience to share but hopefully they can offer some.

@cindy-bee @Debi @jenniferbeaty @rgiustin @Celticheart

@jen-cueva thank you for sharing those links. @Grandma how are you doing?

@jen-cueva it is wonderful to see you pop in on the forums! How did your labs, ECHO and kidney appointment go? I’m envious of your newest treatment…holding a sweet little grandbaby! I’m sure holding that bundle of love is very healing!

I keep up with my internist but am behind in everything else. I could do better with water. I could do…

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@jen-cueva thank you for encouraging our members to post here with the ease of knowing it is private. I hope more members will join the group and share.

@carol-volckmann I’m keeping my fingers and toes crossed for you and @meghan-nevada that oral treatment becomes an option. I’ve mentioned to @cullen-steele in the past that if SubQ became availble when he had PH I don’t know that he would have switched from IV to that. Well, he was on Flolan anyway but it sounds to me like switching from IV…

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@meghan-nevada Thank you for your kind words – they really do help throughout this process of navigating this critical disease.

I had a terrible time on subQ and after several years the pain was tremendous and had switch sides every couple of days. That was when my Pulmonologist switched me to the IV – wow, no more pain! I have been on IV for…

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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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