[Community Member]

@jen[email protected] Hi Jen. Yes, I would be interested in this trial as an add on therapy.

Right now I am on trespostinol IV Hickman line continously 24 hrs,, Latiris and Ambersentin both oral pills. My PH is pretty stable so as an added medication would be good.

I will be seeing Dr Leary this coming Tuesday and plan to talk with him after NY echo.

I will send an update to the forum.

Sending you warm gentle hugs full of joy and love ❤️ 😍 💖

[Community Member]

Thinking of you this week, my dear PHriend, @carol-volckmann !🤗

I hope you’re doing okay. I was wondering how your visit with Dr. Leary went and if you have any updates you feel comfortable sharing.

How are Dick and Cloud doing? The three of you have been on my mind, so I just wanted to reach out and send my love.

Sending you an abundance of positive thoughts and prayers from SD!

[Community Member]

No, one drug trial was enough for me. Side effects from participating but briefly has left me with insidious gastro problems. But then I’m extremely lucky, while originally diagnosed and still have ‘serious’ PH, I get by with only one drug, ambrisentan 10mg. Doc says I am unusual. Yeah. Let’s keep it that way. I do feel for you guys fighting PH and other conditions and needing multiple meds. 🦘💖

[Community Member]

Hi @Aunt Lizzie , I’m sorry to hear you experienced gastro issues while trying the new treatment. It’s frustrating when side effects get in the way, but it sounds like a true blessing that your “unusual” self only needs one pill for your PH treatment. I’m right there with you in hoping it stays that way for a long, long time!🤗🤞

You’re so right, many PH treatments come with tough gastro side effects. I was on one that was so rough I was considering transitioning to IV. Thank goodness Uptravi came along when it did!

Thank you for sharing your experience. It’s so important for us to connect on these things. Sending much love your way!💜

[Community Member]

@Aunt Lizzie Gastrointestinal issues are no fun! It’s so disappointing how often side effects can ruin the potential of a new treatment. But on the bright side, one treatment for severe PH is truly amazing! May that continue for you!

[Community Member]

Hi @jen-cueva I think this is a really good question. I think this question is best answered by just doing whatever makes you the most comfortable. For example, in the past I have been fairly open to some research or clinical trials while others I have flat out turned out down. A great example of this is when I had PH where during this time I was on Flolan. However, at a certain point I was asked if I would feel comfortable with swapping to the medication remodulin.

While this medication in theory was very similar to Flolan with the exception of being easier to mix, longer shelf life, and no longer had to be refrigerated, I made the decision not to make the swap. This was largely due to me being much more comfortable with flolan after being on it for so long at that point. This was also due to the treatment of Flolan actively showing signs of helping me so it was decided not to want to mess with my current treatment plan.

I think when considering things like adding new medications or joining clinical trials in general you have to consider these types of factors for yourself. In my case I had developed a long standing routine that not only I but my family had grown accustomed to. Although the change in medication may have brought about some benefits I was still unsure of what side effects may have been included in these changes and with me being so deep into my treatment and care for PH at the time I was unwilling to change.

I don’t by any means think joining research studies is bad in fact I encourage it as this is how progress and advancements in medicine is made. However, as a patient it should also be done only when you feel comfortable and confident that it is what is best for your and your own individual care.